I felt all week as if I've been in my own little version of the film Groundhog Day. There has been a "sameness" to every day in that I seem to be doing the same things over and over again, like a drone. It's been more than a little disconcerting.
After I posted last week, I went to see Dr. Dimples. I thought (based on what he told me two years ago) that this time he would discharge me from his clinic, since there is nothing else his team can do for me. So last year, he referred me back to Queen Square, and that whole scenario is one that you already know. But, wahoo (or words to that effect) I was quite mistaken.
I told him about Dr. Davies, and the repeating of the 2011 tests, and the fact that improvement was up to 58%-and he seemed really pleased-jovial, even. He is keeping me in the clinic until March, when we will probably retest again at Queen Square. He wants to keep note of my progress. So do I, in fact.
So that was a positive outcome. Unfortunately, there was a flip side: it rained. Heavily. I got caught in it, and it was terrible. I could hardly walk up the road, it rained so hard. The Brits call it "pissing down"-maybe it's crude, but so descriptive, and so very appropriate. And believe me, I waited to see Dimples and I was sitting in the clinic, cold, wet, peed off, and soaked to the skin. When my name was called, I didn't walk down the corridor-I sloshed. I left a water trail. By the time I finally got back to North London I was-still wet. It was definitely not fun. And on Wednesday it was just as bad. I rushed to walk (or, rather, stagger, which is all I can do in the rain) in the morning, and I just got in my door as the skies opened. I like rain. I like to watch it. I like to watch it when I am inside and warm and dry, and I don't have to go anywhere. And, anyway, my clothes were still wet from the day before. So I wasn't very cheerful on Wednesday.
On Thursday I went along to see Steve and have him check the offending expander. Sure enough, it was misbehaving; after only a week, that right side was already showing signs of sinking. I was sinking, too. I kept thinking that I might have to go through the whole procedure again.
We talked it over, and Steve decided to inflate that side again, and continue to inflate weekly if necessary. Eventually we might need to remove the port, and see if the expander keeps contracting. So I have one decent looking breast and one that is, to put it mildly, concave. Ick. If we remove the port and the thing keeps sinking, then we will need to replace both expanders with permanent silicone implants. At least I know what level of pain to expect. If that has to happen, I must remember to request regular visits to the bathroom. That will save me from catapulting myself off the bottom of the bed and nearly knocking myself unconscious in an effort to avoid using those odious bedpans!
Tomorrow marks six weeks since the surgery-and I am so happy that it is now, and not six weeks ago. I can only wait to see what happens when I go back to the clinic on Thursday.
I have started to make a conscious effort to change the way I do things. I take different routes to get to wherever I need to go. I even start the day differently. I've been trying to mix things up a little. I have had terrible trouble sleeping, because that right expander makes things very painful, so the pain keeps me awake at night. So does trying to move around to find a comfortable position. There is no comfortable position. Even breathing causes pain-but I think I will just have to deal with it. Or-I will just have to live with it.
I've started doing all my vestibular exercises again, even though we have had a lot of rain, and even though I've been a bit demoralized by the fact that I have had a major setback in the balance and vision areas. But I've had a setback. It was to be expected. I just need to understand that I will regain what levels I've lost. It'll take some time, and a whole lot of effort. But I've done it before, and I will do it again.
One thing I have been thinking a lot about this past week is the fact that I have been so busy trying to survive over the last five years that I forgot to enjoy life. And-I know I pulled the genetic short straw, but that doesn't mean I shouldn't enjoy whatever time I have left in front of me. I want to get to that truckstop in the sky (but not for many, many, many years) and be able to look back at my life and say that it was not just traumatic, but also filled with joy, good times, good people-and even if one person reads this blog and realizes that we just have to move forward, and never give up, no matter what the circumstances, and be happy anyway-I will have done something for someone.
As for that truckstop in the sky, they'd better have a huge stock of Kettle Chips. And Starbucks. Otherwise I'm not going.
Tuesday, 22 September 2015
Tuesday, 15 September 2015
Just when you think it's safe to go back into the water...
Murphy's Law reached up and bit me hard on the backside-and I didn't really expect it, either. Frankly, a shark would have been more interesting-and probably more entertaining. It has been a stressful two weeks since I last posted. Ugh.
I had a really bad time with balance and vision-really bad-I seem to have regressed a lot. I did expect it-in a way-because surgery was less than five weeks ago, so I don't know what I was thinking when I decided to do everything I had done before the surgery. What an oops that was. I'm cut from armpit to armpit, so I couldn't raise my arms, or lift anything of any consequence. And there was a lot of pain. So I spent a lot of time resting-which, of course, made the balance worse. Another oops moment.
Last Wednesday-exactly four weeks post-op- I had to go to Queen Square to see the physiotherapist. She was great-but couldn't believe I was actually there, since I was staggering all over the place. She also was amazed that I wasn't really depressed about the setback. So we talked about that, and she had me do a whole series of exercises. It turns out that, although I wasn't able to do any of the exercises with my eyes shut, I was better at the other ones than I was when I was tested in March. I can tell you how pleased I was to know that; it means that I am still improving, even though I think, on many occasions, that I am moving backwards rather than forwards. Time to be cheerful (ish).
But-Thursday was about as welcome as a shark attack. I went along for my fortnightly immunoglobulin infusions, and that was okay, except that my usual nurse was on holiday, so someone else handled it-and started an hour late. Bummer. And then I went to see Steve over at the surgery clinic. And was I swearing at Murphy and his bloody law by this time, or wasn't I? The reason for this is: the whole side of the expander on the right side has collapsed. There is a crater where, as far as I can determine, there should not be a crater. So I waited over an hour-again-this being the NHS, I was glad it was only one hour, not three or four-and Steve looked and didn't seem very happy.
That was on Thursday, and Steve took a syringe and inflated the expander (well, yes, he did ask me first, and I said, hell, yes, I'm so freaked out about all this, did I do something wrong?). He stuck a needle into the port and I said I wish he had been the one to shove the needle into the port on my chest that morning, because he didn't hurt me at all. Everything inflated-and I actually had cleavage (or, something resembling cleavage). I also talked all the way through the consultation-it was either talk or burst into tears, so I chose to talk instead.
I go on Thursday to have him examine me again-and the expander is already beginning to sag in the middle. We will need to decide whether to remove it and insert another expander or just insert a permanent implant. My view: a permanent implant. Less trouble. Save my voice, too.
Today I will see Dr. Dimples for the last time. It's sad, I guess, because I have been his patient since just after the gentamicin debacle. But there is nothing more he or his colleagues can do for me. It is up to me, now-up to me with the able assistance of the experienced people at Queen Square.
Remember when I first said (somewhere around a hundred posts ago) that you should always talk to the organ grinder and not the monkey? Not that Dimples is a monkey-but he is the one who sent me to the experts, and Dr. Davies and my two vestibular physiotherapists said that I have more improvements to come, but I must continue to work hard, and work hard daily, no goofing off. Even when I get as far as I can go, I need to work every day, because if I don't, the brain just stops working for me.
I've come a long way-sure, I've got a long way ahead of me, but now I'm looking at it as a major challenge, and I've been able to detach from the anger I felt against the injustice and the four cripplers. It must really suck to be them.
I can report that I am at an internet cafe, waiting for my final appointment with Dimples before he discharges me from his clinic (one more down, I'm halfway out the door of the crappy old Royal London). I walked furtively up the road, just in case I smelled sewage and ran straight into the wife beating, child abusing, dog kicking pile of faecal matter called Bucky Buckland. One never knows what abuse I would get if I ran into him-preferably when I'm in a fast moving vehicle, of course.
I'm really, really lucky that the pile of shite discharged me before the surgery-my ego aside, I was able to quickly move over to the Royal Free, and all treatment (except gastro, which I elected to keep at the London) is now under one roof. It's so much better-and I am so much happier.
Being treated like a human being by people who have so much more experience, expertise, capability, and kindness-it makes an incredible difference. I'm not worried about someone killing me off now. Although, there is always Murphy's Law....
I had a really bad time with balance and vision-really bad-I seem to have regressed a lot. I did expect it-in a way-because surgery was less than five weeks ago, so I don't know what I was thinking when I decided to do everything I had done before the surgery. What an oops that was. I'm cut from armpit to armpit, so I couldn't raise my arms, or lift anything of any consequence. And there was a lot of pain. So I spent a lot of time resting-which, of course, made the balance worse. Another oops moment.
Last Wednesday-exactly four weeks post-op- I had to go to Queen Square to see the physiotherapist. She was great-but couldn't believe I was actually there, since I was staggering all over the place. She also was amazed that I wasn't really depressed about the setback. So we talked about that, and she had me do a whole series of exercises. It turns out that, although I wasn't able to do any of the exercises with my eyes shut, I was better at the other ones than I was when I was tested in March. I can tell you how pleased I was to know that; it means that I am still improving, even though I think, on many occasions, that I am moving backwards rather than forwards. Time to be cheerful (ish).
But-Thursday was about as welcome as a shark attack. I went along for my fortnightly immunoglobulin infusions, and that was okay, except that my usual nurse was on holiday, so someone else handled it-and started an hour late. Bummer. And then I went to see Steve over at the surgery clinic. And was I swearing at Murphy and his bloody law by this time, or wasn't I? The reason for this is: the whole side of the expander on the right side has collapsed. There is a crater where, as far as I can determine, there should not be a crater. So I waited over an hour-again-this being the NHS, I was glad it was only one hour, not three or four-and Steve looked and didn't seem very happy.
That was on Thursday, and Steve took a syringe and inflated the expander (well, yes, he did ask me first, and I said, hell, yes, I'm so freaked out about all this, did I do something wrong?). He stuck a needle into the port and I said I wish he had been the one to shove the needle into the port on my chest that morning, because he didn't hurt me at all. Everything inflated-and I actually had cleavage (or, something resembling cleavage). I also talked all the way through the consultation-it was either talk or burst into tears, so I chose to talk instead.
I go on Thursday to have him examine me again-and the expander is already beginning to sag in the middle. We will need to decide whether to remove it and insert another expander or just insert a permanent implant. My view: a permanent implant. Less trouble. Save my voice, too.
Today I will see Dr. Dimples for the last time. It's sad, I guess, because I have been his patient since just after the gentamicin debacle. But there is nothing more he or his colleagues can do for me. It is up to me, now-up to me with the able assistance of the experienced people at Queen Square.
Remember when I first said (somewhere around a hundred posts ago) that you should always talk to the organ grinder and not the monkey? Not that Dimples is a monkey-but he is the one who sent me to the experts, and Dr. Davies and my two vestibular physiotherapists said that I have more improvements to come, but I must continue to work hard, and work hard daily, no goofing off. Even when I get as far as I can go, I need to work every day, because if I don't, the brain just stops working for me.
I've come a long way-sure, I've got a long way ahead of me, but now I'm looking at it as a major challenge, and I've been able to detach from the anger I felt against the injustice and the four cripplers. It must really suck to be them.
I can report that I am at an internet cafe, waiting for my final appointment with Dimples before he discharges me from his clinic (one more down, I'm halfway out the door of the crappy old Royal London). I walked furtively up the road, just in case I smelled sewage and ran straight into the wife beating, child abusing, dog kicking pile of faecal matter called Bucky Buckland. One never knows what abuse I would get if I ran into him-preferably when I'm in a fast moving vehicle, of course.
I'm really, really lucky that the pile of shite discharged me before the surgery-my ego aside, I was able to quickly move over to the Royal Free, and all treatment (except gastro, which I elected to keep at the London) is now under one roof. It's so much better-and I am so much happier.
Being treated like a human being by people who have so much more experience, expertise, capability, and kindness-it makes an incredible difference. I'm not worried about someone killing me off now. Although, there is always Murphy's Law....
Monday, 31 August 2015
Another fine mess...
Last Wednesday night I was so fed up with strip washing that I decided I just had to take a shower-and wash my hair. I know it was forbidden until Thursday, when the stitches would be removed and the dressing changed-but I just couldn't wait another day.
Strip washing: using a bowl, soap and a washcloth-just doesn't do it for me. It is right up there with my least favorite hospital things-like the food (recycled toxic waste, probably. Perhaps not even recycled), having a cannula shoved in my arm every day for ten days because they kept breaking my veins (oh, joy), and, of course, bedpans. Bedpans have to be at least number 2 on my hospital shit list, right after cannulation. I'm not into pain. Or wet. No thank you.
So I got into the shower, and stood with my back to the shower head, thinking that I could tilt my head back and wash my hair without getting the dressings wet. Er...wrong. I got everything soaked. But I'll tell you, I felt great. I felt human again. Little things-like showers, and feeling really clean-they do make a difference. I cheered up immediately. Only-I got out of the shower and held a towel to the dressings-no place else, just the dressings. You would have laughed. But the things stayed in place (more or less), and I went to the Royal Free on Thursday and had my infusions, then the dressings clinic, where I had the sutures and the dressings removed. I now need to return in two weeks, because that is when the team will begin to inject the ports with saline, stretching the expanders and the skin. Right now I have two very strange looking lumps on my chest; the doc on Thursday said that by Christmas everything should look very, very different. I hope so! I sure hope it will be worth all the pain. I must be nuts to have even considered this operation. But-too late!
When I got back from the hospital I noticed a letter from Barts and the London compliance department. I already knew what was in it (I must be psychic. Or I just know the hospital trust). I was told that Matt Buckland was within his rights to discharge me from the clinic, and that he was very polite to his legal team and the compliance team. Well, obviously. He was bullying, nasty, threatening and manipulative toward me, threatening to have me barred from the hospital altogether-so he is not only a liar but a complete asshole. And, funnily enough, I was neither surprised nor upset.
Buckland is going to be very compliant with his masters; they pay him (an exorbitant amount of money, that is for sure), so he has to be nice. In fact, if his masters tell him to stand in front of them, drop his pants and take a few for the team, you can bet that is what he will do. Anything for his paycheck. The other three will do the same (what a revolting thought THAT is!!).
Presumably the arrogant Matt "Bucky" Buckland then goes home, beats his wife, beats the crap out of his children, and then kicks the dog. If he has a dog, I hope the animal bites him. Hard. And I don't need to say where-but who knows if he even has one? Perhaps the children are someone else's.
I think I've had a lot of time to really consider all this, and to ask myself if the cripplers (Buckland, Longhurst, not-so Bright and Grigoriadou) are really worth my time. My time is valuable. My life is valuable- not to them, obviously, but to me-and to the people who care about me. And the answer has to be that they aren't worth squat. However, I do stand my ground when it comes to outing all four of them, because these are people who should not be practicing medicine. So I have the time, now that the surgery is over and I am finally starting to recover, to do a video, to send links to this blog and the video to everyone I know, and to ask everyone to pass the links on to all their friends, their facebook friends, their Twitter friends (oh, someone tell me how this twitter thing works!).
I've succeeded in embarrassing the hell out of the four cripplers, and that is a good start. They are on everyone's radar. If I can get other people to step up and do some complaining, then the hospital will have no choice but to take some action. And it isn't just the cripplers here at Bart's and the London. They are the only ones I know, but there are so many more - everywhere. Social media is a great platform to expose all those doctors who should be cleaning public toilets, not putting patients' lives at risk.
It would be so wonderful if someone, somewhere contacted me to let me know that a class action suit can be fought on behalf of gentamicin patients in this country; I know it happens in the U.S., but apparently not here. Time for gentamicin to be taken off the market.
Well, this is the first day I have not taken any painkillers, so I'm clearly getting better. It's time for the Kettle Chips...
Strip washing: using a bowl, soap and a washcloth-just doesn't do it for me. It is right up there with my least favorite hospital things-like the food (recycled toxic waste, probably. Perhaps not even recycled), having a cannula shoved in my arm every day for ten days because they kept breaking my veins (oh, joy), and, of course, bedpans. Bedpans have to be at least number 2 on my hospital shit list, right after cannulation. I'm not into pain. Or wet. No thank you.
So I got into the shower, and stood with my back to the shower head, thinking that I could tilt my head back and wash my hair without getting the dressings wet. Er...wrong. I got everything soaked. But I'll tell you, I felt great. I felt human again. Little things-like showers, and feeling really clean-they do make a difference. I cheered up immediately. Only-I got out of the shower and held a towel to the dressings-no place else, just the dressings. You would have laughed. But the things stayed in place (more or less), and I went to the Royal Free on Thursday and had my infusions, then the dressings clinic, where I had the sutures and the dressings removed. I now need to return in two weeks, because that is when the team will begin to inject the ports with saline, stretching the expanders and the skin. Right now I have two very strange looking lumps on my chest; the doc on Thursday said that by Christmas everything should look very, very different. I hope so! I sure hope it will be worth all the pain. I must be nuts to have even considered this operation. But-too late!
When I got back from the hospital I noticed a letter from Barts and the London compliance department. I already knew what was in it (I must be psychic. Or I just know the hospital trust). I was told that Matt Buckland was within his rights to discharge me from the clinic, and that he was very polite to his legal team and the compliance team. Well, obviously. He was bullying, nasty, threatening and manipulative toward me, threatening to have me barred from the hospital altogether-so he is not only a liar but a complete asshole. And, funnily enough, I was neither surprised nor upset.
Buckland is going to be very compliant with his masters; they pay him (an exorbitant amount of money, that is for sure), so he has to be nice. In fact, if his masters tell him to stand in front of them, drop his pants and take a few for the team, you can bet that is what he will do. Anything for his paycheck. The other three will do the same (what a revolting thought THAT is!!).
Presumably the arrogant Matt "Bucky" Buckland then goes home, beats his wife, beats the crap out of his children, and then kicks the dog. If he has a dog, I hope the animal bites him. Hard. And I don't need to say where-but who knows if he even has one? Perhaps the children are someone else's.
I think I've had a lot of time to really consider all this, and to ask myself if the cripplers (Buckland, Longhurst, not-so Bright and Grigoriadou) are really worth my time. My time is valuable. My life is valuable- not to them, obviously, but to me-and to the people who care about me. And the answer has to be that they aren't worth squat. However, I do stand my ground when it comes to outing all four of them, because these are people who should not be practicing medicine. So I have the time, now that the surgery is over and I am finally starting to recover, to do a video, to send links to this blog and the video to everyone I know, and to ask everyone to pass the links on to all their friends, their facebook friends, their Twitter friends (oh, someone tell me how this twitter thing works!).
I've succeeded in embarrassing the hell out of the four cripplers, and that is a good start. They are on everyone's radar. If I can get other people to step up and do some complaining, then the hospital will have no choice but to take some action. And it isn't just the cripplers here at Bart's and the London. They are the only ones I know, but there are so many more - everywhere. Social media is a great platform to expose all those doctors who should be cleaning public toilets, not putting patients' lives at risk.
It would be so wonderful if someone, somewhere contacted me to let me know that a class action suit can be fought on behalf of gentamicin patients in this country; I know it happens in the U.S., but apparently not here. Time for gentamicin to be taken off the market.
Well, this is the first day I have not taken any painkillers, so I'm clearly getting better. It's time for the Kettle Chips...
Tuesday, 25 August 2015
Sliced and diced, bruised, battered, swollen, cut to bits-but still kicking
Anyone who tells you that reconstructive surgery isn't horribly painful is either lying or has no nerve endings. Bite them. Twice. And if you have a dog, get your dog to bite them, too. Painful? Ewww!!
I had one day before admission when the transport people didn't show up at all, and I had to get a minicab to the hospital so I could have my antibiotics. That was really annoying. But ERS, the hospital transport people, sent three ambulances on Saturday to collect me and take me to be admitted. Talk about overkill! ERS, by the way, is a waste management company. Somehow they got the seven year contract to take over all the patient transport for all the London hospitals. Waste management. Huh. It shows. They are completely clueless when it comes to dealing with people.
So I got up to the ward at the time I was told to be there, and discovered that there were no beds. This was on the Saturday before surgery. Everyone was twitching, flying around trying to sort the whole thing out, and finally I was put on an orthopedic ward, with the hope of moving me to the plastic surgery ward. I wondered what happened to the person they turfed out of the bed on orthopedics. Did they shove him out the window? Well...my mind works in strange ways, especially when I know I am facing surgery. I am most definitely not into pain, and I kept asking myself if I really, really wanted to do this. I figured I had until Wednesday morning to run for the exit.
I had visits from the plastic surgery registrars, checking me out, telling me not to be worried. Seriously? Me, not worry? But I tried to stay calm, and did a lot of mindfulness minutes to remind myself why I was doing this in the first place: I don't want to see my chest in the mirror, see ribs, and scars, and remember that I could have easily died from breast cancer. Who wants that constant reminder? Cancer isn't something anyone can forget easily, even with reconstructive surgery. We know that it can always come back to bite us in the ass. And it does that, so I've heard. Repeatedly.
I got through the next few days without incident. My nurse came up from Immunology to insert a gripper needle into the PortaCath I have in my chest. This was so that people would stop stabbing (and breaking) my veins with a cannula every five minutes. And I felt more at ease, and I got my hit of immunoglobulin on the Tuesday, the day before the surgery. Oh joy: the guidelines stated that I had to have very slow infusions, even though I have been doing them for a year by PortaCath. That was annoying; it took seven hours, when it really should only take three. Good thing I had a book.
On Wednesday morning, I was informed that I was first on the list, and Steve came and took out a Sharpie and drew all over my chest. His team of registrars was there, and he was explaining exactly what he was going to do. So I was Sharpie'd - first time ever. They all left, and at 9am I was taken to the theatre. Now-they no longer do premeds, so I was left thinking that even though the side rails were up, I could still jump over them, sprint (or stagger) back to my room, get dressed and go home. It did occur to me. Frequently.
As the orderly pushed the bed down the operating room corridor, I noticed that there were a lot of plastic sheets covering one side of the hallway. Then I heard it: the sound of an electric saw. And it was loud. So I sat up, bolt upright, and said "Oh my, is someone sawing off someone's leg?". Steve and the team were standing there, heard me, started to laugh, and then disappeared as the orderly said (trying to stifle a laugh) that workmen were building new operating theatres. Nobody was sawing anyone. So I said I hoped they weren't going to start tossing out body parts until I was safely inside the theatre. My nurse said I am great for comic relief on the ward, and I said that as soon as I come around from the anesthesia I will be checking for my kidneys.
Just as I was about to fall asleep, someone (I still don't know the identity of the offending party) said that my kidneys would be the least of my worries. Too late to run. I was out cold.
It was all quite horrible. I came around in recovery, was returned to my room, and given drugs. Morphine, I kept saying, morphine! I got morphine for the next day or so, then I was switched to Oramorph, a morphine derivative that can be taken by mouth. Plus paracetamol (The UK equivalent of Tylenol) and Tramadol, a very mild painkiller. And I kept asking for water.
That first day-and night-I drank so much water I'm surprised I have any kidneys left at all. And, as we know, what goes in must eventually come out. I wasn't allowed out of bed, so I was given a bedpan. Constantly. All night. It drove the nursing assistant crazy; she didn't want to keep coming and bringing a bedpan every twenty minutes, and clearly wasn't pleased. If she'd been a nurse, I would have had a nickname for her: Nurse Ratched.
Thursday night I had enough of the bedpan thing. Really, I think the person who invented the bedpan must have been a misogynist-probably the same person who invented the speculum.
I crept down to the bottom of the bed, thinking that I would climb out and go to the bathroom. This is after a dose of Oramorph, so I think I can be forgiven for such a stupid act. I ended up catapulting myself off the bed and fell ass over teakettle into a big heap on the floor. I could not use my arms, because all the muscles had been cut. So I lay there, swearing, and thinking I should ring for the nurse, but I would get a lecture, and I didn't want a lecture. All I wanted was the bathroom. So I was finally able to hoist myself back onto the bed, and I knocked over the water jug-which was full. Water all over the bed, all over me, all over. Period. I ended up calling for the nurse, but I only said I'd knocked over the water jug. That was it: change of sheets, change of bedclothes, looks of disgust (obviously they thought I'd had a different kind of accident. Please. My bladder isn't that big). And I said nothing to anyone about my excursion, although the wound started to bleed and the dressing had to be changed the next day. Lesson learned.
I was pretty much confined to bed-with side rails firmly up-until Saturday, when one of the registrars came to see me and I said I have to be allowed up to go to the loo. I reminded him that bedpans don't always work well, and that nobody bothers to provide any paper, so I am in danger of developing something that closely resembles nappy rash. That same afternoon I was taken to the loo by one of the nurses, and I can't tell you how great it felt to be out of bed, however briefly.
The best thing about being in the hospital was - leaving the hospital. I have to comment on the food, which really looked like someone else had eaten it first. On one tray someone had put what was supposed to be an apple pie. It was drowned in custard-and the custard was congealed. Actually, it looked like a bowl of pus. Perhaps it was, who knows?
I got out on Wednesday, and I walked through my door at 3:30 Wednesday afternoon. I could not wait. Even the ERS transport geniuses drove me to the wrong address, so that speaks volumes about their competence (or lack thereof). The first thing I did was make a big mug of decent coffee. Then I just went to bed. Didn't unpack. Just went to bed.
This is the first time since I got back on Wednesday that I haven't been really, really sick: too sick to walk, although I did try, and too sick to do much of anything. I'm afraid to move too quickly for fear that one of the implants will move from one side of my chest to the other. Silly, I know, but you should see these alient growths on my chest. There is a huge amount of swelling, and still a lot of pain, but I actually have-cleavage. Cleavage! Amazing. It all looks really strange, but I will have dressings changed and sutures removed at the end of the week, so I will see what Steve says I can and can't do. It isn't even two weeks since surgery, so I guess vacuuming and lifting things are still out of the question. Awww....
I'll stop for now, but there is so much more that I feel like I can get back on the blog tomorrow and tell you the rest of it. I'm not writing a book-at least, not yet.
And what am I going to do now? I'm going to reward myself for these last few weeks of pain by taking the long trek to-Dunkin Donuts!
Munchkins anyone?
I had one day before admission when the transport people didn't show up at all, and I had to get a minicab to the hospital so I could have my antibiotics. That was really annoying. But ERS, the hospital transport people, sent three ambulances on Saturday to collect me and take me to be admitted. Talk about overkill! ERS, by the way, is a waste management company. Somehow they got the seven year contract to take over all the patient transport for all the London hospitals. Waste management. Huh. It shows. They are completely clueless when it comes to dealing with people.
So I got up to the ward at the time I was told to be there, and discovered that there were no beds. This was on the Saturday before surgery. Everyone was twitching, flying around trying to sort the whole thing out, and finally I was put on an orthopedic ward, with the hope of moving me to the plastic surgery ward. I wondered what happened to the person they turfed out of the bed on orthopedics. Did they shove him out the window? Well...my mind works in strange ways, especially when I know I am facing surgery. I am most definitely not into pain, and I kept asking myself if I really, really wanted to do this. I figured I had until Wednesday morning to run for the exit.
I had visits from the plastic surgery registrars, checking me out, telling me not to be worried. Seriously? Me, not worry? But I tried to stay calm, and did a lot of mindfulness minutes to remind myself why I was doing this in the first place: I don't want to see my chest in the mirror, see ribs, and scars, and remember that I could have easily died from breast cancer. Who wants that constant reminder? Cancer isn't something anyone can forget easily, even with reconstructive surgery. We know that it can always come back to bite us in the ass. And it does that, so I've heard. Repeatedly.
I got through the next few days without incident. My nurse came up from Immunology to insert a gripper needle into the PortaCath I have in my chest. This was so that people would stop stabbing (and breaking) my veins with a cannula every five minutes. And I felt more at ease, and I got my hit of immunoglobulin on the Tuesday, the day before the surgery. Oh joy: the guidelines stated that I had to have very slow infusions, even though I have been doing them for a year by PortaCath. That was annoying; it took seven hours, when it really should only take three. Good thing I had a book.
On Wednesday morning, I was informed that I was first on the list, and Steve came and took out a Sharpie and drew all over my chest. His team of registrars was there, and he was explaining exactly what he was going to do. So I was Sharpie'd - first time ever. They all left, and at 9am I was taken to the theatre. Now-they no longer do premeds, so I was left thinking that even though the side rails were up, I could still jump over them, sprint (or stagger) back to my room, get dressed and go home. It did occur to me. Frequently.
As the orderly pushed the bed down the operating room corridor, I noticed that there were a lot of plastic sheets covering one side of the hallway. Then I heard it: the sound of an electric saw. And it was loud. So I sat up, bolt upright, and said "Oh my, is someone sawing off someone's leg?". Steve and the team were standing there, heard me, started to laugh, and then disappeared as the orderly said (trying to stifle a laugh) that workmen were building new operating theatres. Nobody was sawing anyone. So I said I hoped they weren't going to start tossing out body parts until I was safely inside the theatre. My nurse said I am great for comic relief on the ward, and I said that as soon as I come around from the anesthesia I will be checking for my kidneys.
Just as I was about to fall asleep, someone (I still don't know the identity of the offending party) said that my kidneys would be the least of my worries. Too late to run. I was out cold.
It was all quite horrible. I came around in recovery, was returned to my room, and given drugs. Morphine, I kept saying, morphine! I got morphine for the next day or so, then I was switched to Oramorph, a morphine derivative that can be taken by mouth. Plus paracetamol (The UK equivalent of Tylenol) and Tramadol, a very mild painkiller. And I kept asking for water.
That first day-and night-I drank so much water I'm surprised I have any kidneys left at all. And, as we know, what goes in must eventually come out. I wasn't allowed out of bed, so I was given a bedpan. Constantly. All night. It drove the nursing assistant crazy; she didn't want to keep coming and bringing a bedpan every twenty minutes, and clearly wasn't pleased. If she'd been a nurse, I would have had a nickname for her: Nurse Ratched.
Thursday night I had enough of the bedpan thing. Really, I think the person who invented the bedpan must have been a misogynist-probably the same person who invented the speculum.
I crept down to the bottom of the bed, thinking that I would climb out and go to the bathroom. This is after a dose of Oramorph, so I think I can be forgiven for such a stupid act. I ended up catapulting myself off the bed and fell ass over teakettle into a big heap on the floor. I could not use my arms, because all the muscles had been cut. So I lay there, swearing, and thinking I should ring for the nurse, but I would get a lecture, and I didn't want a lecture. All I wanted was the bathroom. So I was finally able to hoist myself back onto the bed, and I knocked over the water jug-which was full. Water all over the bed, all over me, all over. Period. I ended up calling for the nurse, but I only said I'd knocked over the water jug. That was it: change of sheets, change of bedclothes, looks of disgust (obviously they thought I'd had a different kind of accident. Please. My bladder isn't that big). And I said nothing to anyone about my excursion, although the wound started to bleed and the dressing had to be changed the next day. Lesson learned.
I was pretty much confined to bed-with side rails firmly up-until Saturday, when one of the registrars came to see me and I said I have to be allowed up to go to the loo. I reminded him that bedpans don't always work well, and that nobody bothers to provide any paper, so I am in danger of developing something that closely resembles nappy rash. That same afternoon I was taken to the loo by one of the nurses, and I can't tell you how great it felt to be out of bed, however briefly.
The best thing about being in the hospital was - leaving the hospital. I have to comment on the food, which really looked like someone else had eaten it first. On one tray someone had put what was supposed to be an apple pie. It was drowned in custard-and the custard was congealed. Actually, it looked like a bowl of pus. Perhaps it was, who knows?
I got out on Wednesday, and I walked through my door at 3:30 Wednesday afternoon. I could not wait. Even the ERS transport geniuses drove me to the wrong address, so that speaks volumes about their competence (or lack thereof). The first thing I did was make a big mug of decent coffee. Then I just went to bed. Didn't unpack. Just went to bed.
This is the first time since I got back on Wednesday that I haven't been really, really sick: too sick to walk, although I did try, and too sick to do much of anything. I'm afraid to move too quickly for fear that one of the implants will move from one side of my chest to the other. Silly, I know, but you should see these alient growths on my chest. There is a huge amount of swelling, and still a lot of pain, but I actually have-cleavage. Cleavage! Amazing. It all looks really strange, but I will have dressings changed and sutures removed at the end of the week, so I will see what Steve says I can and can't do. It isn't even two weeks since surgery, so I guess vacuuming and lifting things are still out of the question. Awww....
I'll stop for now, but there is so much more that I feel like I can get back on the blog tomorrow and tell you the rest of it. I'm not writing a book-at least, not yet.
And what am I going to do now? I'm going to reward myself for these last few weeks of pain by taking the long trek to-Dunkin Donuts!
Munchkins anyone?
Saturday, 8 August 2015
It's down to the wire-who says I'm terrified?
Someone once said that the road to Hell is paved with good intentions. How very true!!
I left everything to the last week-and then discovered that there was no last week. I discovered that I had to be at the hospital every day for intravenous antibiotics, and for the all-important immunoglobulin. Wonderful. I sat in the day clinic for eleven hours, and then it took ages to get home-and there was a rail strike, to make matters worse. I really felt like the anti-destination team was out in force this week. So-everything almost got done. Almost.
My friend came down for a couple of weeks-she knows how apprehensive I am about surgery, so she will be staying - and cooking! Wahoo, cooking. Hospital food is nothing but noxious, and the last thing I want to do is develop food poisoning this close to the operation. And-it's a case of quid pro quo, because she wants to go away for Christmas, and I said I would go north and have a little holiday myself. In the cold. And wet. No matter, because I like cold weather. So we're both happy.
The video will have to wait until I am back from the hospital, which is a bummer, but I just ran out of time. That will teach me to procrastinate!
Will I let the hospital thing go? Will I walk away, now that I have smashed (hopefully) a few reputations? Seriously?? Short answer: of course not!
Time to go. Fingers crossed, and all that. My friend overseas called me last night and wished me luck-and said that I will have a new nickname: tits. Cute, don't you think? Made me smile...
As what's his name said: I'll be back.
I left everything to the last week-and then discovered that there was no last week. I discovered that I had to be at the hospital every day for intravenous antibiotics, and for the all-important immunoglobulin. Wonderful. I sat in the day clinic for eleven hours, and then it took ages to get home-and there was a rail strike, to make matters worse. I really felt like the anti-destination team was out in force this week. So-everything almost got done. Almost.
My friend came down for a couple of weeks-she knows how apprehensive I am about surgery, so she will be staying - and cooking! Wahoo, cooking. Hospital food is nothing but noxious, and the last thing I want to do is develop food poisoning this close to the operation. And-it's a case of quid pro quo, because she wants to go away for Christmas, and I said I would go north and have a little holiday myself. In the cold. And wet. No matter, because I like cold weather. So we're both happy.
The video will have to wait until I am back from the hospital, which is a bummer, but I just ran out of time. That will teach me to procrastinate!
Will I let the hospital thing go? Will I walk away, now that I have smashed (hopefully) a few reputations? Seriously?? Short answer: of course not!
Time to go. Fingers crossed, and all that. My friend overseas called me last night and wished me luck-and said that I will have a new nickname: tits. Cute, don't you think? Made me smile...
As what's his name said: I'll be back.
Sunday, 2 August 2015
The Final Countdown (hopefully not too final!)
I only have a few more days before I am admitted into the hospital for my reconstruction. I can still change my mind-but I probably won't. I know what to expect. I have an immunology team, and an immunology consultant-and a hospital-that are far superior to the Royal London (and the four cripplers). For the first time in five years, I'm not afraid that if I go on the ward I might not come out (except in a wheelchair or a bodybag). Seriously-these new guys are really working hard to show me that I have nothing to worry about.
Of course, I thought the same thing last time-and that didn't work out so well, did it? Ah, the cynic in me (or should I say the realist?). I'll keep blogging as long as I can-but after the surgery I expect to get lots and lots of morphine. I did ask the surgeon to give me enough morphine to keep me sedated until Christmas-but that didn't go down so well (I wonder why).
I've kept on top of all the things that need doing before I go in: bills to pay, friends and family to contact, and, of course, cleaning the house. I will probably not be able to raise my arms for awhile. And my GP tells me not to be frightened when I see my chest after the surgery-as if I really want to look. For awhile. Maybe a few months.
I went to the museums this past week, got together with friends, and mostly looked like (their words) a deer caught in the headlights. Surgery is still surgery, and I will still need anesthesia. Eww. Yesterday I went to see my friend in East London-and the train stopped between stations, which was a bit annoying. It reminded me of the London bombings ten years ago. Now nobody is afraid to travel on the underground. The bombings are history. And history might repeat itself-there are crazies everywhere.
I got to my friend's house and met his new girlfriend; we had a few coffees, some lunch, and the dog (a Staffordshire terrier) jumped up to say hello and immediately began to hump my leg. You haven't lived until you've had about 100 pounds of Staffy trying to shag your leg. My friends were aghast-but I was laughing so hard I nearly fell off the chair. Not the first time a dog has tried to shag my leg. And they only go for the left leg-any dog behaviorists out there have a theory on this?
I will be uploading another video to YouTube before I go into the hospital at the weekend. YouTube is so addictive! I'll let you know when I've done it. Now I am too busy and preoccupied with the upcoming surgery to worry about the cripplers. I have almost done all I can to blow the whistle and let the world know what has happened-and will continue to happen until these monsters are stopped. But-one person can only do so much.
There is no such thing in this country as a class-action suit-or everyone would sue the makers of Gentamicin, and the vicious drug would be withdrawn from the market. It's only because it is cheap (there are better drugs out there, ones that do the job but are a little more expensive-and less toxic) that the NHS refuse to stop using it. This is because the NHS aren't interested in patients-only money.
Ooh-I nearly forgot to mention the lion-killing dentist. I actually did go on Facebook, and there were a lot of comments about how disgusting that this man gets away with it. So, me being me, I posted that someone should find him, yank out all his teeth with no anesthesia, shoot him in the legs (preferably the kneecaps), and smash his fingers so he can never hold any kind of weapon. I added that, of course, everyone knows I am a pacifist.
Did I ever get abuse for those comments! Some people have no sense of humor (or proportion).
Of course, I thought the same thing last time-and that didn't work out so well, did it? Ah, the cynic in me (or should I say the realist?). I'll keep blogging as long as I can-but after the surgery I expect to get lots and lots of morphine. I did ask the surgeon to give me enough morphine to keep me sedated until Christmas-but that didn't go down so well (I wonder why).
I've kept on top of all the things that need doing before I go in: bills to pay, friends and family to contact, and, of course, cleaning the house. I will probably not be able to raise my arms for awhile. And my GP tells me not to be frightened when I see my chest after the surgery-as if I really want to look. For awhile. Maybe a few months.
I went to the museums this past week, got together with friends, and mostly looked like (their words) a deer caught in the headlights. Surgery is still surgery, and I will still need anesthesia. Eww. Yesterday I went to see my friend in East London-and the train stopped between stations, which was a bit annoying. It reminded me of the London bombings ten years ago. Now nobody is afraid to travel on the underground. The bombings are history. And history might repeat itself-there are crazies everywhere.
I got to my friend's house and met his new girlfriend; we had a few coffees, some lunch, and the dog (a Staffordshire terrier) jumped up to say hello and immediately began to hump my leg. You haven't lived until you've had about 100 pounds of Staffy trying to shag your leg. My friends were aghast-but I was laughing so hard I nearly fell off the chair. Not the first time a dog has tried to shag my leg. And they only go for the left leg-any dog behaviorists out there have a theory on this?
I will be uploading another video to YouTube before I go into the hospital at the weekend. YouTube is so addictive! I'll let you know when I've done it. Now I am too busy and preoccupied with the upcoming surgery to worry about the cripplers. I have almost done all I can to blow the whistle and let the world know what has happened-and will continue to happen until these monsters are stopped. But-one person can only do so much.
There is no such thing in this country as a class-action suit-or everyone would sue the makers of Gentamicin, and the vicious drug would be withdrawn from the market. It's only because it is cheap (there are better drugs out there, ones that do the job but are a little more expensive-and less toxic) that the NHS refuse to stop using it. This is because the NHS aren't interested in patients-only money.
Ooh-I nearly forgot to mention the lion-killing dentist. I actually did go on Facebook, and there were a lot of comments about how disgusting that this man gets away with it. So, me being me, I posted that someone should find him, yank out all his teeth with no anesthesia, shoot him in the legs (preferably the kneecaps), and smash his fingers so he can never hold any kind of weapon. I added that, of course, everyone knows I am a pacifist.
Did I ever get abuse for those comments! Some people have no sense of humor (or proportion).
Wednesday, 29 July 2015
When one door closes...and all that garbage
I don't like cliches-I think most people get fed up with them. I really, really "like" the one that goes: when one door closes, another one opens. Yeah, right? Usually, when one door closes, it does so with such force that it either smacks you in the face or belts you in the ass. But-in this case, I am mistaken.
I got the old door slamming in the backside two weeks ago-as you know-and I was only annoyed at the disgraceful way it was done-and, of course, the fact that I wasn't the first one to say I'm going. And I have given the three cripplers and the petulant overgrown baby two weeks of my time-and that is two weeks more than they are worth. Actually, two seconds would be more than they are worth. I'm just about ready for the video update, now that I am no longer a YouTube virgin...and I have written to everyone I know to ask them to see the video and to check out this blog. So-I've nearly done all I can. Now I just have to sit back and watch the fertilizer hit the fan (yippee).
I said that a door opens when one closes-and my door opened in record time. I was able to organize the immunoglobulin (actually, the credit goes to John, my now ex-nurse), I organized everything I needed to do for the surgery (which is in two week countdown now, so I only have a few days to change my mind!).
Two weeks ago my GP referred me to the immunology team at the same hospital that is "hosting" my reconstruction. To their credit, the team pulled out all the stops and sent me an appointment for -this morning. After a forty-five minute appointment, I realized that I am in the right place. The new immunologist is terrific: friendly, competent, organized, grown up (got that, Goofy?), and I now have appointments for my infusions, as well as everything in readiness for the surgery in two weeks.
Now I am kicking myself because I wish I had jumped ship years ago. I couldn't stand up, so I couldn't jump anything anywhere. And when I was finally able to walk a bit without falling over, I discovered I had breast cancer. Hmmm...it has been a really awful five years. Only now I feel like that door being slammed in my backside was a blessing, because I could't keep procrastinating.
It has been a really valuable two week period-and, for the first time in five years, I feel reasonably safe to go into the hospital. I did say "reasonably safe"-the jury will be out until the surgery is over, and believe me when I say that when I come around from the anesthesia, I will be checking for my kidneys.
I'm not quitting the fight, either. When the pathetic four find that everything they say and everything they do is under intense scrutiny, and they have no choice but to wake up and either learn how to behave or go and flip burgers in McDonald's, then I will have done my job. Then I will start on something (or someone) else. If I'm not fighting for a cause - I get bored...
I got the old door slamming in the backside two weeks ago-as you know-and I was only annoyed at the disgraceful way it was done-and, of course, the fact that I wasn't the first one to say I'm going. And I have given the three cripplers and the petulant overgrown baby two weeks of my time-and that is two weeks more than they are worth. Actually, two seconds would be more than they are worth. I'm just about ready for the video update, now that I am no longer a YouTube virgin...and I have written to everyone I know to ask them to see the video and to check out this blog. So-I've nearly done all I can. Now I just have to sit back and watch the fertilizer hit the fan (yippee).
I said that a door opens when one closes-and my door opened in record time. I was able to organize the immunoglobulin (actually, the credit goes to John, my now ex-nurse), I organized everything I needed to do for the surgery (which is in two week countdown now, so I only have a few days to change my mind!).
Two weeks ago my GP referred me to the immunology team at the same hospital that is "hosting" my reconstruction. To their credit, the team pulled out all the stops and sent me an appointment for -this morning. After a forty-five minute appointment, I realized that I am in the right place. The new immunologist is terrific: friendly, competent, organized, grown up (got that, Goofy?), and I now have appointments for my infusions, as well as everything in readiness for the surgery in two weeks.
Now I am kicking myself because I wish I had jumped ship years ago. I couldn't stand up, so I couldn't jump anything anywhere. And when I was finally able to walk a bit without falling over, I discovered I had breast cancer. Hmmm...it has been a really awful five years. Only now I feel like that door being slammed in my backside was a blessing, because I could't keep procrastinating.
It has been a really valuable two week period-and, for the first time in five years, I feel reasonably safe to go into the hospital. I did say "reasonably safe"-the jury will be out until the surgery is over, and believe me when I say that when I come around from the anesthesia, I will be checking for my kidneys.
I'm not quitting the fight, either. When the pathetic four find that everything they say and everything they do is under intense scrutiny, and they have no choice but to wake up and either learn how to behave or go and flip burgers in McDonald's, then I will have done my job. Then I will start on something (or someone) else. If I'm not fighting for a cause - I get bored...
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