Since last time, I have been irradiated, magnetized, poked, prodded, and otherwise interfered with (medically speaking, of course). Every day I have been to a different clinic, specialist, test-it's enough to make my head spin. And-I'm not finished yet.
Last week was my birthday, and that was the one day I went on strike: no tests, no hospitals, nothing. I felt like I was on holiday...and it was great. I had breakfast in a local restaurant, did a little retail therapy, cooked a lovely meal, had some champagne-lovely. I even sat in the park and meditated, recharged, readied myself for - today. I will soon be on my way to have a tube shoved down my throat (I don't know why, but doctors seem to be fascinated by my throat. Very strange) to find out why I had three months with no voice. So off I will go, and for a couple of days afterwards I will probably be mute. Goody. I'm tired of explaining to the hospital people that CVID is hereditary. Do they still ask if I'm contagious? Where am I living, exactly? Of course they do. Grrr...
Last week I went to see Jersey Boys in the West End. I decided that I really haven't done anything special on my birthday since-well, since before the Gentamicin, and that was five and a half years ago. So I splurged, and swallowed hard (expensive? Oh, yeah), got the ticket and braved hordes of people and teeming rain and took myself to Piccadilly. And I enjoyed it. The American accents were dire, of course. In a word, they sucked - but I expected that, and for me, it was all about the music. And the musical numbers were superb. For a couple of hours I just listened to music and didn't think about anything medical.
Well, I had a birthday. And I am back in the saddle, as they say: time to start going out and doing things. Weekdays are tough, because I am not finished with all the hospital stuff yet-but in December everything eases off, and that is when I will take myself out and start doing things. I need to walk more, I need to do my exercises more-and I went to Queen Square on Monday and had to retake the platform test (the thing moves, and I am tethered so I don't fall off). I did really well with my eyes open, but failed the eyes closed test (no surprise there). Even with all the surgery, and the illness, and everything-I'm still improving. I have until February to do more, because I repeat the test in February.
I seem to have defied all expectations by not only improving, but by still being alive (and relatively healthy. Of course, if they keep scanning me, they will cause cancer, the idiots!).
The cougar is on the prowl (maybe. But I am shy, so - maybe not).
Wednesday, 28 October 2015
Saturday, 17 October 2015
Irradiated up the wazoo-and beyond
Since I wrote last, I have had so many scans, MRIs, Xrays-and, of course, some bloodletting to keep things interesting-that I must be radioactive by now. In fact, I should be glowing in the dark-it would probably save me a fortune on electricity. But-no such luck. No glowing.
This all happens annually, so I actually get another year to get over all the radiation. It can't be good for anyone. And I have to say, if you want to ever have children, stay away from me for at least another few days. Just in case. What a way to cure the overpopulation!
I saw the lovely Mr. Tan. He was very supportive when I told him I left the Royal London and skipped over to the Royal Free. I also flashed my boobs-I thought the nurse who was there was going to have an aneurysm. But, of course, it was Mr. T who removed the two cancerous ones-and referred me to Steve-so I did ask him first if he wanted to see Steve's work (I'm so polite, it's disgusting). He was delighted with the results, and reminded me that it will take some time to heal completely. He said not to be discouraged, that I will look great when it is all done. I will also look old. When they bury me (not for another thirty years or so, hopefully), the only things that will be perky will be my boobs. Everything else is already heading south. I swear at age, but-I don't much like the alternative.
Now, Mr. T told me something that I thought was really, really interesting. I know that breast cancer can come back, so I asked him about that. He said that a great deal of research has been done about recurrence of breast cancer, and findings show that if it does return, it almost always goes to one of three places: the lungs, the bones or the liver. It rarely recurs in the breast, even in people who have had lumpectomies or single mastectomies (I had a double. I must be greedy). So there you are: something you can tell all your friends, and look really, really smart (even more so than usual).
I am having scans of all three areas, and I will have those every two years or so-and I will see Mr. T in six months, unless there is a problem (which, of course, there won't be). He then said I am looking very skinny. I said-thank you, but I'm not skinny. He said: yes, you are. Well, I'm not going to pick a fight with the man who removed cancer, am I? That would be bad manners. So I said thanks for everything, he gave me a hug, and I immediately went out and bought a blueberry muffin. Well, I'm skinny, right? So I hit the sugar-as you do. And I stuffed my face all the way home.
It has been that sort of week, and I did everything and saw everyone, and I am finally able to get online (remind me to throw this computer off the roof of a very tall building!). Next week is my birthday, and I might just treat myself. After all, I have survived a few very, very bad years. And I haven't really celebrated. It's time I do. I've been so focused on keeping alive, surviving, that I haven't enjoyed life. What is the point of trying so hard if there is no joy at the end of it? I could walk outside and get hit by a bus (nearly did that a couple of times, too). Or get struck by lightning (no, I haven't done that, if you were going to ask. Which I'm sure you weren't). Or get blown up by a terrorist bomb (this is London, after all. And that would be the world's shittiest luck, I can tell you).
I'm determined to start enjoying life, because I don't know when it is going to end. Live it up. Have a blueberry muffin. Kettle Chips. Chocolate. (not all at the same time. Ewww!).
As long as I'm still breathing, I refuse to give up. That is what I call obstinate (or foolhardy. Depends on your point of view!). And-you'll hear from me more often, as long as I don't lose it and trash this computer (already a piece of crap, by the way!).
This all happens annually, so I actually get another year to get over all the radiation. It can't be good for anyone. And I have to say, if you want to ever have children, stay away from me for at least another few days. Just in case. What a way to cure the overpopulation!
I saw the lovely Mr. Tan. He was very supportive when I told him I left the Royal London and skipped over to the Royal Free. I also flashed my boobs-I thought the nurse who was there was going to have an aneurysm. But, of course, it was Mr. T who removed the two cancerous ones-and referred me to Steve-so I did ask him first if he wanted to see Steve's work (I'm so polite, it's disgusting). He was delighted with the results, and reminded me that it will take some time to heal completely. He said not to be discouraged, that I will look great when it is all done. I will also look old. When they bury me (not for another thirty years or so, hopefully), the only things that will be perky will be my boobs. Everything else is already heading south. I swear at age, but-I don't much like the alternative.
Now, Mr. T told me something that I thought was really, really interesting. I know that breast cancer can come back, so I asked him about that. He said that a great deal of research has been done about recurrence of breast cancer, and findings show that if it does return, it almost always goes to one of three places: the lungs, the bones or the liver. It rarely recurs in the breast, even in people who have had lumpectomies or single mastectomies (I had a double. I must be greedy). So there you are: something you can tell all your friends, and look really, really smart (even more so than usual).
I am having scans of all three areas, and I will have those every two years or so-and I will see Mr. T in six months, unless there is a problem (which, of course, there won't be). He then said I am looking very skinny. I said-thank you, but I'm not skinny. He said: yes, you are. Well, I'm not going to pick a fight with the man who removed cancer, am I? That would be bad manners. So I said thanks for everything, he gave me a hug, and I immediately went out and bought a blueberry muffin. Well, I'm skinny, right? So I hit the sugar-as you do. And I stuffed my face all the way home.
It has been that sort of week, and I did everything and saw everyone, and I am finally able to get online (remind me to throw this computer off the roof of a very tall building!). Next week is my birthday, and I might just treat myself. After all, I have survived a few very, very bad years. And I haven't really celebrated. It's time I do. I've been so focused on keeping alive, surviving, that I haven't enjoyed life. What is the point of trying so hard if there is no joy at the end of it? I could walk outside and get hit by a bus (nearly did that a couple of times, too). Or get struck by lightning (no, I haven't done that, if you were going to ask. Which I'm sure you weren't). Or get blown up by a terrorist bomb (this is London, after all. And that would be the world's shittiest luck, I can tell you).
I'm determined to start enjoying life, because I don't know when it is going to end. Live it up. Have a blueberry muffin. Kettle Chips. Chocolate. (not all at the same time. Ewww!).
As long as I'm still breathing, I refuse to give up. That is what I call obstinate (or foolhardy. Depends on your point of view!). And-you'll hear from me more often, as long as I don't lose it and trash this computer (already a piece of crap, by the way!).
Wednesday, 7 October 2015
Just When You Think You're Safe....you get a nasty surprise
The black dog left as suddenly as he had arrived. I felt better on Monday evening, for no apparent reason. The dog probably went to bite someone else on the ass. Never mind: he was gone.Ish.
Yesterday I went along to Boots Opticians. Boots is a major pharmacy chain, now also in various US states-and the company has fingers in various pies, including opticians. Three years ago, I went for an eye exam-and discovered that I needed glasses. Ah, one of the joys of middle age: grey hair (my hair has been grey since I was in my twenties. I always colored it, though), lines and wrinkles, liver spots, cellulite, wobbly bits in danger of heading dangerously toward the floor-and, of course, CRS (can't remember shit, for those of you who can't remember shit). And your arms suddenly aren't long enough-or your nose isn't short enough-so you need a bit of optical help. Hence: Boots Opticians.
This is all a long winded way of saying that I had my eye exam-and what a disaster that was. Mrs. Chernick, who has been at this particular branch since-probably since the place was built-wanted my medical history, then wanted to know if I am contagious (no, I said, CVID isn't contagious. Dummy - I wanted to add, she's got all this in her notes from last time). Then she couldn't get the prescription right, the photos of the eyes were blank (oh, my-don't I have eyes? Shocker), and she was twitching and scurrying around, because to put everything right would have taken more time than she was prepared to spend. I paid for all this, too, which was very annoying. So she showed me the door, practically pushed me through it, and said she was going to write to my GP and have me referred to a specialist. And that was that.
Well-duh-I walked home, in the rain, and I stopped and began to cry. Of course, I felt like a total ass, crying in the street, but I was so upset it was unbelievable. Everything just suddenly got to me at that moment, and it all began with Mrs. Chernick, who wasn't terribly nice about the whole thing. I found myself wishing that someone would just run me over and put me out of my misery - how very unlike me! I cried myself back home, got inside, locked the door, and just sat (cold, wet from the rain, and highly pissed off, by the way), and cried, and had a first class pity party. If I was a drinker, I would have been completely plastered. But no, I just cried until I bored myself, and thought about what I had wished: to just quit, to give up, to stop all the treatments, sell everything (not that I have anything worth selling), and just go somewhere, anywhere, and live for as long as I could-which wouldn't be long, if I stopped the immunoglobulin and the antibiotics. So I decided: stop being such a jerk.
I haven't gone through so much just to quit now. I can be such a drama queen! I sat. For the entire day. And I decided that I wasn't going to let the likes of Mrs. Chernick to dictate the way I felt about myself and my life. If I quit now, everything I have been through will have been for nothing. That isn't the way I want to go out: a quitter. And things, I decided, will get better. This was just a glitch.
Now I realize something really important: I have to be very careful about disclosing anything about my health, unless it's to doctors, people who have a say in my medical treatment. Chernick almost had apoplexy, even though it was all right there in her notes from three years ago. Obviously she was worried that I have HIV- and nothing could be further from the truth. I try to be open about CVID, because it is hereditary, and not contagious (anyone can only develop it if I give birth to them. God forbid). But there is absolutely no point in saying anything to anyone unless there is a good reason to do so. And-it's sad, really, that there is such a prejudice against a condition that is caused by defective genes. But hey-this is the UK, and most people think that genes are the things you wear: like Levis. Can't really argue with stupidity and ignorance, can you?
Do I feel better after yesterday's upset? Yes-one day spent being upset at someone's ignorance is one day more than that person deserves. Am I going to keep schtum from now on? Huh-is the Pope Catholic? (that's a definite yes)
Yesterday I went along to Boots Opticians. Boots is a major pharmacy chain, now also in various US states-and the company has fingers in various pies, including opticians. Three years ago, I went for an eye exam-and discovered that I needed glasses. Ah, one of the joys of middle age: grey hair (my hair has been grey since I was in my twenties. I always colored it, though), lines and wrinkles, liver spots, cellulite, wobbly bits in danger of heading dangerously toward the floor-and, of course, CRS (can't remember shit, for those of you who can't remember shit). And your arms suddenly aren't long enough-or your nose isn't short enough-so you need a bit of optical help. Hence: Boots Opticians.
This is all a long winded way of saying that I had my eye exam-and what a disaster that was. Mrs. Chernick, who has been at this particular branch since-probably since the place was built-wanted my medical history, then wanted to know if I am contagious (no, I said, CVID isn't contagious. Dummy - I wanted to add, she's got all this in her notes from last time). Then she couldn't get the prescription right, the photos of the eyes were blank (oh, my-don't I have eyes? Shocker), and she was twitching and scurrying around, because to put everything right would have taken more time than she was prepared to spend. I paid for all this, too, which was very annoying. So she showed me the door, practically pushed me through it, and said she was going to write to my GP and have me referred to a specialist. And that was that.
Well-duh-I walked home, in the rain, and I stopped and began to cry. Of course, I felt like a total ass, crying in the street, but I was so upset it was unbelievable. Everything just suddenly got to me at that moment, and it all began with Mrs. Chernick, who wasn't terribly nice about the whole thing. I found myself wishing that someone would just run me over and put me out of my misery - how very unlike me! I cried myself back home, got inside, locked the door, and just sat (cold, wet from the rain, and highly pissed off, by the way), and cried, and had a first class pity party. If I was a drinker, I would have been completely plastered. But no, I just cried until I bored myself, and thought about what I had wished: to just quit, to give up, to stop all the treatments, sell everything (not that I have anything worth selling), and just go somewhere, anywhere, and live for as long as I could-which wouldn't be long, if I stopped the immunoglobulin and the antibiotics. So I decided: stop being such a jerk.
I haven't gone through so much just to quit now. I can be such a drama queen! I sat. For the entire day. And I decided that I wasn't going to let the likes of Mrs. Chernick to dictate the way I felt about myself and my life. If I quit now, everything I have been through will have been for nothing. That isn't the way I want to go out: a quitter. And things, I decided, will get better. This was just a glitch.
Now I realize something really important: I have to be very careful about disclosing anything about my health, unless it's to doctors, people who have a say in my medical treatment. Chernick almost had apoplexy, even though it was all right there in her notes from three years ago. Obviously she was worried that I have HIV- and nothing could be further from the truth. I try to be open about CVID, because it is hereditary, and not contagious (anyone can only develop it if I give birth to them. God forbid). But there is absolutely no point in saying anything to anyone unless there is a good reason to do so. And-it's sad, really, that there is such a prejudice against a condition that is caused by defective genes. But hey-this is the UK, and most people think that genes are the things you wear: like Levis. Can't really argue with stupidity and ignorance, can you?
Do I feel better after yesterday's upset? Yes-one day spent being upset at someone's ignorance is one day more than that person deserves. Am I going to keep schtum from now on? Huh-is the Pope Catholic? (that's a definite yes)
Monday, 5 October 2015
The Curious Case of the Exploding Expander
Last week was one of those ho-hum, meh, underwhelming weeks. At least, it started that way, but didn't end very well at all.
On Tuesday I had to go back to the Royal Free to have the registrar check the expander that has been giving me all this grief for weeks. She poked around my chest (that was weird), and decided that the expander has shifted to the right. How exciting, I thought: I will have one breast facing front and one facing back, if it keeps moving. I said that-but she wasn't amused. She was even less amused when she couldn't locate the port on the left side. I asked her where it could have gone. Did it do a runner? Was it going to be found somewhere near my left kidney? Ah, no-no sense of humor, I guess. And I wasn't very pleased, either. So we just left it, since I had to return and see the expert, the surgeon, on Thursday. Tuesday was, for me, a wasted journey.
On Wednesday I was due to go to the London to have my annual gastroscopy. Once a year I get one hosepipe shoved up my back end, and once a year I get a hosepipe shoved down the other end. This is all to see if there is anything major to worry about, since one of the problems with CVID is that it impacts everything to do with the digestive system (and is related to colon cancer). I was fasting, and on the way to the hospital, when I had the most unbelievable pain in the right side-I really thought the right expander was rupturing. It was so painful I could barely breathe. And-I was at the Royal London, so there wasn't anything I could do except wait it out and hope it would stop-or explode,whichever came first. After about twenty minutes the pain subsided. Finally. Nothing flew out of my chest, so I figured I would survive until the next day.
I waited for hours for the hosepipe; everyone was running extremely late. By the time I saw Sean (what a hero-he apologized for the severe delay, something that is unknown in the NHS!), I had fasted for nearly twenty four hours and my stomach was shaking hands with my backbone.
The test took about half an hour, some biopsies were taken-and I chose not to have sedation, because I figured I would be there forever if I said okay. So it hurt, but I was glad in the end. Nobody even offered me a glass of water. That is the Royal London for you-so I am glad that I went over to the Royal Free, where they are much more civilized. I'm keeping the gastro and neurology teams at the London, though. Sean and Dimples have known me for years, and I have every confidence in them. I don't sweat at the idea of going to see them, which I did with the immunology team.
Thursday I went to see my surgeon. Honestly, if I got paid for all the mileage I do each week, going from one hospital to another, I could go to the Bahamas for six months.
Steve had a poke around, said he is pleased with the expander-and that it hasn't ruptured, and has only moved slightly, so I shouldn't worry- yet. He inflated the left side by 50mls of saline, and wants to see me in six weeks. If the right side deflates in that time, we will decide what to do then. So that was that, and I was very relieved. Plus, I have cleavage. What a bonus.
Then I got hit by the black dog. It came out of nowhere and bit me right in the backside when I wasn't looking. I've been bitten before-so many times you would think my butt would be smaller. Too bad. And for two days I didn't really go anywhere, although I forced myself to walk. I had to walk. It was very unpleasant-but I knew that it would pass if I just hung out with it for a bit and then made myself move, take some action, walk, whatever.
Yesterday there was a Patients' Day at the Royal Free, and I went along and saw several people I knew: immunology staff, and immunology patients, too. We heard the latest research into CVID, the newest pumps for immunoglobulin delivery-and a talk about depression, which is one symptom of CVID (one of many). Gut problems, chest problems, depression-all these subjects were covered really well, and we had lunch, too. Even the coffee was good-and you all know what I think about British coffee. Except for Starbucks (and my own), you could use it to strip paint. So when I tasted the brew I was very pleasantly surprised. That in itself cheered me up.
Today I still have the remnants of the blues. We have rain-lots of rain, lots of wind, lots of cold-after a beautiful weekend, too. But when you know the reasons behind symptoms, they are easier to handle. One person out of every 50,000 is born with CVID. That translates to 20 people out of one million. Some idiots sniff and say, oh, that isn't so rare. I'm one of the twenty. Trust me when I say that yes, it is rare! And, like the Energizer bunny, I just keep going. I've come this far-I'm not ready to quit yet. I want to irritate people for at least another 30 years or so...
On Tuesday I had to go back to the Royal Free to have the registrar check the expander that has been giving me all this grief for weeks. She poked around my chest (that was weird), and decided that the expander has shifted to the right. How exciting, I thought: I will have one breast facing front and one facing back, if it keeps moving. I said that-but she wasn't amused. She was even less amused when she couldn't locate the port on the left side. I asked her where it could have gone. Did it do a runner? Was it going to be found somewhere near my left kidney? Ah, no-no sense of humor, I guess. And I wasn't very pleased, either. So we just left it, since I had to return and see the expert, the surgeon, on Thursday. Tuesday was, for me, a wasted journey.
On Wednesday I was due to go to the London to have my annual gastroscopy. Once a year I get one hosepipe shoved up my back end, and once a year I get a hosepipe shoved down the other end. This is all to see if there is anything major to worry about, since one of the problems with CVID is that it impacts everything to do with the digestive system (and is related to colon cancer). I was fasting, and on the way to the hospital, when I had the most unbelievable pain in the right side-I really thought the right expander was rupturing. It was so painful I could barely breathe. And-I was at the Royal London, so there wasn't anything I could do except wait it out and hope it would stop-or explode,whichever came first. After about twenty minutes the pain subsided. Finally. Nothing flew out of my chest, so I figured I would survive until the next day.
I waited for hours for the hosepipe; everyone was running extremely late. By the time I saw Sean (what a hero-he apologized for the severe delay, something that is unknown in the NHS!), I had fasted for nearly twenty four hours and my stomach was shaking hands with my backbone.
The test took about half an hour, some biopsies were taken-and I chose not to have sedation, because I figured I would be there forever if I said okay. So it hurt, but I was glad in the end. Nobody even offered me a glass of water. That is the Royal London for you-so I am glad that I went over to the Royal Free, where they are much more civilized. I'm keeping the gastro and neurology teams at the London, though. Sean and Dimples have known me for years, and I have every confidence in them. I don't sweat at the idea of going to see them, which I did with the immunology team.
Thursday I went to see my surgeon. Honestly, if I got paid for all the mileage I do each week, going from one hospital to another, I could go to the Bahamas for six months.
Steve had a poke around, said he is pleased with the expander-and that it hasn't ruptured, and has only moved slightly, so I shouldn't worry- yet. He inflated the left side by 50mls of saline, and wants to see me in six weeks. If the right side deflates in that time, we will decide what to do then. So that was that, and I was very relieved. Plus, I have cleavage. What a bonus.
Then I got hit by the black dog. It came out of nowhere and bit me right in the backside when I wasn't looking. I've been bitten before-so many times you would think my butt would be smaller. Too bad. And for two days I didn't really go anywhere, although I forced myself to walk. I had to walk. It was very unpleasant-but I knew that it would pass if I just hung out with it for a bit and then made myself move, take some action, walk, whatever.
Yesterday there was a Patients' Day at the Royal Free, and I went along and saw several people I knew: immunology staff, and immunology patients, too. We heard the latest research into CVID, the newest pumps for immunoglobulin delivery-and a talk about depression, which is one symptom of CVID (one of many). Gut problems, chest problems, depression-all these subjects were covered really well, and we had lunch, too. Even the coffee was good-and you all know what I think about British coffee. Except for Starbucks (and my own), you could use it to strip paint. So when I tasted the brew I was very pleasantly surprised. That in itself cheered me up.
Today I still have the remnants of the blues. We have rain-lots of rain, lots of wind, lots of cold-after a beautiful weekend, too. But when you know the reasons behind symptoms, they are easier to handle. One person out of every 50,000 is born with CVID. That translates to 20 people out of one million. Some idiots sniff and say, oh, that isn't so rare. I'm one of the twenty. Trust me when I say that yes, it is rare! And, like the Energizer bunny, I just keep going. I've come this far-I'm not ready to quit yet. I want to irritate people for at least another 30 years or so...
Tuesday, 22 September 2015
Groundhog Day:it all repeats, and repeats, and repeats...
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.
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, 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...
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