Yes, I am going to wish everyone a very Happy Thanksgiving-but first, a true story (yet another one) that will make you laugh. Or cringe. Or both.
Since last time I have done the hospital run nearly every day. Some people have the school run, I have the hospital run. I'm certain that the school run is a lot more fun. And this bloody double-stuffed Oreo in my chest isn't getting any less painful -but try to explain that to doctors...I've given up even talking to doctors. Most of them have been coughing and spluttering - there's flu going around - so I try not to sit downwind. And I still got it anyway. Boo. If everyone would just stop breathing, I would never get sick. Of course, then I would also have nobody to wind up, nobody to be the recipient of my potshots (which, if I may say so, are pretty bloody good!), and I would be absolutely bored to tears. So there goes that idea.
In between going and waiting, and waiting, and waiting...(you get the picture)...I had a Saturday that was free. I decided to go to the West End to buy another adaptor for my laptop, since mine has expired. It is dead as a dodo-so off I went to find a replacement. And there I was, at 9am on Saturday (last week), going full speed ahead down Oxford Street-always a joy. Always packed. But I was early enough to get in and out before the hordes started pushing and shoving-or so I thought. Wrong! Wrong, wrong, wrong!!
I got pushed aside by a couple of people coming my way, not looking, not moving, not apologizing-too bad, because I so wanted to tell them where to shove their apology. And then I got hit from behind-I wasn't expecting that, and I very nearly fell over. Well, I've had four and a half years of these morons hitting me, and enough was enough. I exploded. In fact, I went ballistic.
I have to preface this by telling you that I was brought up not to swear. If I said darn, I got told that young ladies don't use bad language. God help me if I said "damn"- I was told off and grounded. I once said shit-and I very nearly got my mouth rinsed out with soapy water. I say very nearly: my mother tried, and I punched her. That was the last time she tried, and for the rest of my childhood I only swore silently. Lovely child-I was just lovely (assertive, though!!).
But here I turned around and I screamed at the woman : "Are you fucking retarded???". She just looked at me-and I went off like an H-bomb. "what the hell, do you think this (I waved the stick) is there for decoration? What kind of an imbecile are you? Is everyone in your family brain-dead, or just you?" She looked at me and said that I had tripped her, and that was all I needed. I said "you came up from behind me, how did I trip you? Do I have eyes in the back of my head? What a fucking asshole you are!!" And I was just warming up.
She then had the nerve to say that I had offended her. And I raised my stick, took it with both hands, pointed it at her, and snapped: " I offended you? I offended you?? You retard, I'll show you how I offend you. Bend over and I will shove this stick so far up your fat ass, it will come out your mouth!" She looked at me, I took two steps forward, and she turned and waddled away as quickly as she could. Like a whale being chased by Captain Ahab and his harpoon.
An old man was standing a few feet away, smoking a cigarette, and laughing all the time I was snapping at this imbecile. And he was laughing so hard I thought he was going to have a seizure. I looked at him and said that I just can't believe these people-and that this has been going on for four years. I've had enough, I said. So he looked at me, and said-"young lady"-well, I liked him already. Needed glasses, but I liked him anyway. Then he proceeded to bang on about how bad this country has become, and even the people who grew up here can't be bothered to have manners, etc, etc...he went on for about ten minutes, and then he stopped and told me that people from other countries aren't the only ones who are carrying knives, cans of stuff designed to blind someone, and I need to be more careful. He warned me: don't talk back to these people, even though I want to swear at them or just tell them off. You never know who is going to beat or stab you-or worse, he said. He told me that I made his day-in fact, I made his week-by having a go, but he then said that he didn't want to read about me in the newspapers. So I thanked him-and I said that I wasn't sorry I did that, in fact, I felt terrific. We said our goodbyes, and I went on my merry way.
I kept his warning in mind when I was nearly home, and outside a supermarket there was a big kerfuffle. Some guy was trying to steal a woman's handbag-that usually doesn't happen near home, it isn't a huge crime area (well, it wasn't, anyway), and he was pulling one way, she was not going to give it up without a fight. And I noticed that she was using a cane-well, I wasn't having that, was I?
Just as I started to go nearer-with the intention of getting stuck in (fool that I am sometimes), she turned around, lifted one leg, and kicked him so hard in the balls that he doubled over. It was glorious. I looked at her and said "now that's what I call a bullseye"- and she smiled and said that he had picked the wrong person, because she spent years learning-kick boxing. Oh, brilliant. Not only was that brilliant, but my local Starbucks is only three shops away, and the uproar caught the attention of two people sitting and having coffee: two police people-who promptly came out and arrested the guy.
Somewhere in North London there is a guy who can now probably audition for the Vienna Boys Choir. And-I wonder how easy it would be for me to learn kickboxing??
Last year I wasn't sure I would make it to Thanksgiving-and it wasn't a very good one, because I was just too sick to enjoy it. In fact, I've had not-so-great (and sometimes not at all) Thanksgivings since 2010. So for me, this is the first good one in some time. I'm sitting down later and making a list of everything I have to be thankful for-after all, what other reason is there to celebrate Thanksgiving (apart from gluttony, of course: masses of food and drink. Hail to that, I'm all for it) except to be grateful?
I'm still here. In spite of the best efforts of some doctors (we all know who they are, don't we?), I am still here. I'm not 100%, but I am working on it. If I had nine lives of a cat, I would probably be on life number 7.
So, even though I get very down at times (especially when I fall over), I know how lucky I am. And it seems that a lot of people are starting to read this blog, so I must be doing some good somewhere. How cool is that!!!
Happy Thanksgiving. Have something strong in my name. I'm having a glass of champagne in yours!!
Thursday, 27 November 2014
Friday, 14 November 2014
Ready for my close-up, Mr. DeMille
I have been busy-I wish I could say it was something other than hospital visits, but-not so. A morning appointment means you sit around all day-and I do mean, all day. That happened several times this past week. If you are going to an appointment with a consultant-well, anyone, really-you must remember to bring lunch. And a big bottle of water. And a book-something around the size of War and Peace should see you through. Maybe.
I did my due diligence. I had a lump removed, and it turned out to be a not-so-good lump. But, the surgeon got the whole thing, so I am clear (ish). I'm on the "watch" list: they are going to watch for symptoms. Of course, they had me on the watch list in 2010, and that didn't work out so well, did it? I need to check for symptoms-I am on so many antibiotics, how would I know a symptom if I saw one? So I get a colonoscopy in six months and we will all see if anything else decides to appear. Colonoscopies-so much fun. I had a colonoscopy. Get near my back end and I will kick very hard. I honestly don't know how anyone could stand having anal sex. They must be masochists.
It's reached a point where they (surgeons) have taken so many pieces of my body that they will soon be able to make a quilt. King-sized, of course. Perhaps they could do with making a few lamp shades and sending them to BMW (oooooh, that was a funny, not a dig at the Germans. I promise!).
Last week I had to go to the pre-admission clinic at the Royal Free, which is where I will be having my reconstruction (eventually. Remember hurry up and wait?), I went through my medical history, had height and weight measured, the usual boring stuff-and two veins in my arm destroyed before the nurse actually went to get someone who knew what he was doing. By that time, of course, I was horribly bruised. Good thing I am a pacifist. Then I had to go into another room, where a cameraperson was waiting-complete with lights. Very professional. I had to remove my shirt, and the woman photographed my chest from every angle. I couldn't help but laugh: there I was in a soft porn shoot. I told her that if I had known I was going to be photographed, I would have worn Spanx. She just looked at me. Oh, well, it's only a scarred chest. Big deal.
Friday arrived, and I had to go to the day surgery area at yet another hospital. This is due to the fact that, although I initially swore I would never have one, I agreed to have a hemodialysis line inserted. Hemodialysis line: to me it is a PortaCath (something for you anoraks out there to Google. I did-repeatedly-before I agreed to have one).
A PortaCath is a line that goes from a small port (inserted in the chest wall) into the tip of the heart. I don't really like the idea of someone shoving something into my chest-even worse is the fact that the line goes into the main vein into the heart-but it was either that or continue to have what few veins I have in my arms completely brutalized and destroyed. Even John (my nurse) finds it difficult to find a vein to take blood, or to cannulate for my antibody infusions. So I reluctantly agreed to it. And I am still surprised, one week later, I am still alive. More or less.
The hospital transport was too early, I had to wait around for hours (and I didn't bring a book-shame on me, I should know by now!!. The anesthetist made a mess of my vein that held the cannula, and my hand blew up to twice its size. I was nearly screaming, it was so painful. They really screwed up-and I was terrified that if they couldn't even get a line into my hand, what were they going to do with the PortaCath?
Well. I got through it all, and got home 12 hours after I arrived at the hospital-with a very swollen hand and a very sore chest. I was told to keep the wound covered, and not to get it wet for at least five days. That was Friday; on Monday I had to go back in for my antibody replacement-through the port. It hurt. And when I got to the clinic, I had the chance to look at my port in front of the mirror.
Oh, good grief, I couldn't believe it! Matt, my immunologist, said it would be about the size of a small egg-or a button. Most of the "egg", he said, would be inside the chest. And the surgeon who installed the thing said that he was going to use the smallest pediatric port he had. I can imagine if he put one of these in a baby-you would need a hoist just to carry it around. This Porta Cath is about the size of a double-stuffed Oreo. And there is a huge tube that runs from the Oreo up over my collarbone and down into my chest. My goodness, I look sexy. To a blind person, maybe.
I was nearly in tears. All the nurses came over and said how good it looks-and John said that it is really quite small-but it sticks out because I have no fat on top. So couldn't they have put it in my thigh? Plenty of fat there! So I have been grumpy, tired and in pain all week. And this thing in my chest looks like it is an alien ready to jump out (I knew I shouldn't have watched that movie again!).
I'm told that it will look better after a few weeks, and will settle down and be a lot less painful. After awhile, the doctor said, I wouldn't even know it is there. Hah. Of course he would say that: he isn't the one who is walking around with a double-stuffed Oreo in his chest.
I did my due diligence. I had a lump removed, and it turned out to be a not-so-good lump. But, the surgeon got the whole thing, so I am clear (ish). I'm on the "watch" list: they are going to watch for symptoms. Of course, they had me on the watch list in 2010, and that didn't work out so well, did it? I need to check for symptoms-I am on so many antibiotics, how would I know a symptom if I saw one? So I get a colonoscopy in six months and we will all see if anything else decides to appear. Colonoscopies-so much fun. I had a colonoscopy. Get near my back end and I will kick very hard. I honestly don't know how anyone could stand having anal sex. They must be masochists.
It's reached a point where they (surgeons) have taken so many pieces of my body that they will soon be able to make a quilt. King-sized, of course. Perhaps they could do with making a few lamp shades and sending them to BMW (oooooh, that was a funny, not a dig at the Germans. I promise!).
Last week I had to go to the pre-admission clinic at the Royal Free, which is where I will be having my reconstruction (eventually. Remember hurry up and wait?), I went through my medical history, had height and weight measured, the usual boring stuff-and two veins in my arm destroyed before the nurse actually went to get someone who knew what he was doing. By that time, of course, I was horribly bruised. Good thing I am a pacifist. Then I had to go into another room, where a cameraperson was waiting-complete with lights. Very professional. I had to remove my shirt, and the woman photographed my chest from every angle. I couldn't help but laugh: there I was in a soft porn shoot. I told her that if I had known I was going to be photographed, I would have worn Spanx. She just looked at me. Oh, well, it's only a scarred chest. Big deal.
Friday arrived, and I had to go to the day surgery area at yet another hospital. This is due to the fact that, although I initially swore I would never have one, I agreed to have a hemodialysis line inserted. Hemodialysis line: to me it is a PortaCath (something for you anoraks out there to Google. I did-repeatedly-before I agreed to have one).
A PortaCath is a line that goes from a small port (inserted in the chest wall) into the tip of the heart. I don't really like the idea of someone shoving something into my chest-even worse is the fact that the line goes into the main vein into the heart-but it was either that or continue to have what few veins I have in my arms completely brutalized and destroyed. Even John (my nurse) finds it difficult to find a vein to take blood, or to cannulate for my antibody infusions. So I reluctantly agreed to it. And I am still surprised, one week later, I am still alive. More or less.
The hospital transport was too early, I had to wait around for hours (and I didn't bring a book-shame on me, I should know by now!!. The anesthetist made a mess of my vein that held the cannula, and my hand blew up to twice its size. I was nearly screaming, it was so painful. They really screwed up-and I was terrified that if they couldn't even get a line into my hand, what were they going to do with the PortaCath?
Well. I got through it all, and got home 12 hours after I arrived at the hospital-with a very swollen hand and a very sore chest. I was told to keep the wound covered, and not to get it wet for at least five days. That was Friday; on Monday I had to go back in for my antibody replacement-through the port. It hurt. And when I got to the clinic, I had the chance to look at my port in front of the mirror.
Oh, good grief, I couldn't believe it! Matt, my immunologist, said it would be about the size of a small egg-or a button. Most of the "egg", he said, would be inside the chest. And the surgeon who installed the thing said that he was going to use the smallest pediatric port he had. I can imagine if he put one of these in a baby-you would need a hoist just to carry it around. This Porta Cath is about the size of a double-stuffed Oreo. And there is a huge tube that runs from the Oreo up over my collarbone and down into my chest. My goodness, I look sexy. To a blind person, maybe.
I was nearly in tears. All the nurses came over and said how good it looks-and John said that it is really quite small-but it sticks out because I have no fat on top. So couldn't they have put it in my thigh? Plenty of fat there! So I have been grumpy, tired and in pain all week. And this thing in my chest looks like it is an alien ready to jump out (I knew I shouldn't have watched that movie again!).
I'm told that it will look better after a few weeks, and will settle down and be a lot less painful. After awhile, the doctor said, I wouldn't even know it is there. Hah. Of course he would say that: he isn't the one who is walking around with a double-stuffed Oreo in his chest.
Saturday, 1 November 2014
The crown of the warrior
After the gentamicin event, my good friend sent me a crown. She called me a warrior (warrior princess, but I think I am a little old to be a princess. Make it a warrior queen instead!). Maureen reminded me that I am tough enough to fight this-and I have been fighting ever since.
Whenever I feel so frustrated and fed up, I look at the crown, which holds pride of place over my bed. And I have to smile. Gentamicin, complete loss of vestibular system, serious chest infections, knee surgery, and, of course, cancer-I have had a lot to fight about. For four years my life has been all about doctors, hospitals and survival. It has been tough at the best of times, excruciating at the worst of times. And I am still fighting.
Of course, those of you who have kept up with this blog know all this, so I am repeating myself. I do that a lot: I repeat myself. This is a sure sign of middle age, along with lines, wrinkles, gray hair, sags everywhere, wobbly bits-and forgetfulness. Oh joy-something to look forward to, isn't it? But when you consider the alternative, it isn't really so bad. I repeat myself, but I don't walk down the street and hold conversations with myself at top volume. That wouldn't be good. People would think I'm from Essex. That would be awful.
This week has been incredibly traumatic. I entertained myself by having my hair cut-and by going to the Unitarian Church for a meditation group on Monday night. That was okay-the people who ran it spoke so softly that nobody at the back of the room could hear them, but we all relaxed in our own way. Happily, nobody was snoring, so that was a bonus.
Tuesday I went along to the hospital. I was shaking so hard, I am surprised that I didn't dislocate something. And I sat in the clinic, shaking, feeling like I wanted to either faint or throw up (whichever would come first). But I controlled myself, because throwing up would be unsociable, and fainting would be painful. So I sat and shook.By the time I was called in to see Mr. Tan's associate, I could barely stand up. It was last year all over again. I was so certain that the cancer had returned, I sat and burst into tears, just as I did last year. Mind you, I cry at commercials, so it was no surprise that I sat and wept (although I was terribly embarrassed). Mr. Choudry said that everyone bursts into tears, so he's used to it. Nice of him to say so...
I don't have breast cancer, although there is something in the abdomen-but that will be removed next week, so I am not to worry. Apart from that - I can live to fight another day. At least. So I held it together, got out, walked down the corridor and into the ladies room. I then sat and sobbed for ten minutes. Maybe longer. I was too busy weeping to take note of the time-but I was in there for a long time. Possibly people were wondering if I fell in.
I managed to get out and I don't know how I was able to get myself together enough to get home. Honestly-I don't think that all the hysterics were only due to this near-crisis. I think that a lot of the pain and anxiety came from last year, when I thought I was going to die. I never really processed the trauma; I was too busy arranging for my knee to be fixed. In retrospect, I might have made a better decision and left the kneecap to this year, rather than last year. Too late to kick myself for that, though (at least I am able to kick myself, which is more than I could do last year at this time!).
I had committed to attending a potluck supper at the church-on Tuesday night after seeing the consultant. I figured I could be distracted by food-and there was a ton of food. There were eleven of us, and I made vegan flapjacks because my new friend Carol is vegan. It was a lot of fun, actually-and the food was good, so we all overate. There was wine, of course, so I was happy. But it seems that Kat, who knew about the tests, told several people that I had cancer and it was terminal. Really, do you remember playing telephone when we were kids, and by the time the message was relayed by the last person it bore no resemblance to the original message?
This was just like that. Some idiot (called Sean) asked me where the cancer is, and whether it is terminal. How insensitive can one person get? I just looked at him, and someone else changed the subject. I think he knew what a total wanker he was - but I just left it alone, since the guy is huge and I didn't feel like telling him off during a social occasion-or ever, for that matter. Some people have no brains or tact (or feelings) at all.
That was the low point of the evening, but I didn't let it ruin the entire evening. I realized how much I missed going out and socializing. And I decided to go fully macrobiotic: no meat, no dairy, no food with chemicals in it, no animal products at all. I don't eat fish, so that is no problem-but I will miss cheese!
Years ago I had a friend who was diagnosed with spinal cancer, and was told to wrap up his affairs, since there was nothing more to be done. The guy had small children-and he started reading about macrobiotics, and told me that he was going to follow a strictly macrobiotic diet. He didn't really have anything to lose, did he? I was in university, he was a graduate student, and we lost touch for a few years. But - he is still alive and well, kept to his macrobiotic diet, living in Europe with his family-thirty years later he is absolutely fine. So much for medical advice: sometimes it is just plain wrong.
I wonder how long it will be before I get sick of eating rice? How many ways can you eat rice? Well, you have stayed with me this long, so I will keep you updated on the "thousand ways to eat rice and veggies" diet. As you know, I am far too obstinate to give up. The fat lady hasn't sung yet-in fact, she is nowhere to be found. And if the good do die young, I will be around 100 and still hitting people with my stick.
Whenever I feel so frustrated and fed up, I look at the crown, which holds pride of place over my bed. And I have to smile. Gentamicin, complete loss of vestibular system, serious chest infections, knee surgery, and, of course, cancer-I have had a lot to fight about. For four years my life has been all about doctors, hospitals and survival. It has been tough at the best of times, excruciating at the worst of times. And I am still fighting.
Of course, those of you who have kept up with this blog know all this, so I am repeating myself. I do that a lot: I repeat myself. This is a sure sign of middle age, along with lines, wrinkles, gray hair, sags everywhere, wobbly bits-and forgetfulness. Oh joy-something to look forward to, isn't it? But when you consider the alternative, it isn't really so bad. I repeat myself, but I don't walk down the street and hold conversations with myself at top volume. That wouldn't be good. People would think I'm from Essex. That would be awful.
This week has been incredibly traumatic. I entertained myself by having my hair cut-and by going to the Unitarian Church for a meditation group on Monday night. That was okay-the people who ran it spoke so softly that nobody at the back of the room could hear them, but we all relaxed in our own way. Happily, nobody was snoring, so that was a bonus.
Tuesday I went along to the hospital. I was shaking so hard, I am surprised that I didn't dislocate something. And I sat in the clinic, shaking, feeling like I wanted to either faint or throw up (whichever would come first). But I controlled myself, because throwing up would be unsociable, and fainting would be painful. So I sat and shook.By the time I was called in to see Mr. Tan's associate, I could barely stand up. It was last year all over again. I was so certain that the cancer had returned, I sat and burst into tears, just as I did last year. Mind you, I cry at commercials, so it was no surprise that I sat and wept (although I was terribly embarrassed). Mr. Choudry said that everyone bursts into tears, so he's used to it. Nice of him to say so...
I don't have breast cancer, although there is something in the abdomen-but that will be removed next week, so I am not to worry. Apart from that - I can live to fight another day. At least. So I held it together, got out, walked down the corridor and into the ladies room. I then sat and sobbed for ten minutes. Maybe longer. I was too busy weeping to take note of the time-but I was in there for a long time. Possibly people were wondering if I fell in.
I managed to get out and I don't know how I was able to get myself together enough to get home. Honestly-I don't think that all the hysterics were only due to this near-crisis. I think that a lot of the pain and anxiety came from last year, when I thought I was going to die. I never really processed the trauma; I was too busy arranging for my knee to be fixed. In retrospect, I might have made a better decision and left the kneecap to this year, rather than last year. Too late to kick myself for that, though (at least I am able to kick myself, which is more than I could do last year at this time!).
I had committed to attending a potluck supper at the church-on Tuesday night after seeing the consultant. I figured I could be distracted by food-and there was a ton of food. There were eleven of us, and I made vegan flapjacks because my new friend Carol is vegan. It was a lot of fun, actually-and the food was good, so we all overate. There was wine, of course, so I was happy. But it seems that Kat, who knew about the tests, told several people that I had cancer and it was terminal. Really, do you remember playing telephone when we were kids, and by the time the message was relayed by the last person it bore no resemblance to the original message?
This was just like that. Some idiot (called Sean) asked me where the cancer is, and whether it is terminal. How insensitive can one person get? I just looked at him, and someone else changed the subject. I think he knew what a total wanker he was - but I just left it alone, since the guy is huge and I didn't feel like telling him off during a social occasion-or ever, for that matter. Some people have no brains or tact (or feelings) at all.
That was the low point of the evening, but I didn't let it ruin the entire evening. I realized how much I missed going out and socializing. And I decided to go fully macrobiotic: no meat, no dairy, no food with chemicals in it, no animal products at all. I don't eat fish, so that is no problem-but I will miss cheese!
Years ago I had a friend who was diagnosed with spinal cancer, and was told to wrap up his affairs, since there was nothing more to be done. The guy had small children-and he started reading about macrobiotics, and told me that he was going to follow a strictly macrobiotic diet. He didn't really have anything to lose, did he? I was in university, he was a graduate student, and we lost touch for a few years. But - he is still alive and well, kept to his macrobiotic diet, living in Europe with his family-thirty years later he is absolutely fine. So much for medical advice: sometimes it is just plain wrong.
I wonder how long it will be before I get sick of eating rice? How many ways can you eat rice? Well, you have stayed with me this long, so I will keep you updated on the "thousand ways to eat rice and veggies" diet. As you know, I am far too obstinate to give up. The fat lady hasn't sung yet-in fact, she is nowhere to be found. And if the good do die young, I will be around 100 and still hitting people with my stick.
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