As of today, I am five weeks post-op. I don't want to rush my through my life-it is going by at warp speed as it is-but I am so glad it is now and not five weeks ago-or even three or four weeks ago. I'm in much less pain. Of course, I still don't want to look at myself in the mirror-but I think that fear will pass. Eventually.
I went to the cancer center at the Royal Free Hospital on Tuesday. It's good-if you are a member (I am now), you can go in any time and have a cup of tea or coffee, and have a chat with anyone who happens to be around. And-they have Pilates and yoga classes, so I will be signing up for those. They even have exercise classes for women who are at least 12 weeks post surgery. I'll do that in a few weeks. So-there is support out there, I just needed to look for it.
The shock horror of the week is my legal case against Bart's. It is no surprise that people think that the only good place for lawyers is at the bottom of the ocean!! Mine were totally incompetent; they couldn't organize a necrophiliac's convention in the county morgue. So I started phoning around, and spoke with a couple of other firms-and the bad news is that virtually nobody who sues over gentamicin wins. Culpability is extremely difficult to prove. Causation, they all said: it's the doctors' word against mine, and you know who has the money-and therefore the power. My idiots milked the case for all it was worth-they just did it for the money. Because I went privately, rather than try for legal aid, or any of that stuff, I was a bit like the cash cow: ready to be taken for a ride. So-that made it a rather bad week, and that is why I simply hid out and didn't go near my computer.
I will get through this. I will get over this. I always do. People keep telling me how strong I am (they also keep telling me how thin I am, which is annoying, because I can fit into all my old skinny clothes. Yay.). I suppose they are right: I am strong. But I think that most people have more inner strength than they think. It takes a crisis to discover how strong and powerful we really are. And I have had enough crises for ten people!!
So that is my crappy news of the week. And the other crappy news of the week is that Haringey sent a surveyor to examine my flat yesterday. Three people showed up; we could have had a party. The short version is that they won't move me and they won't do anything about the damp and the mold. And I should, they said, be happy to be where I am, because so many people live in places that are much worse. Eeek. What a bloody awful week!! I will do the best I can with the place I've got until I am well enough to go back to private accommodation. This was my first ever council flat-and, trust me, it will be my last. If I stay there long enough, it will be my last flat of any kind, ever. So I am pushing myself to do more vestibular exercises to counteract the cancer, the surgery, the Tamoxifen.
Well, it is true that we don't always get what we want, no matter how many self-help gurus (and retailers) tell us differently. We just make them all rich, and wonder what we've done wrong. We've done nothing wrong-except listen to the wrong people!!! I'm finally learning to deal with whatever is right in front of me-even it I don't like it, and don't expect it.
In the sense that I'm finally able to look at life the way it is-rather than the way I want it to be, and then beat myself up (emotionally, obviously) when things don't go my way because I blame myself for the alleged failure to create what I want-cancer has given me a gift. The rose-colored glasses are now off for good. And-I don't stress over things as much as I did before-things and people. What is most important? My health. Without that, what else is there? There is nothing like cancer to force you to reassess your priorities!
I'm not afraid of kicking someone's ass out the door, either. I've done a lot of ass-kicking lately. It's great exercise!!
Thursday 27 June 2013
Saturday 22 June 2013
Live long and prosper
I haven't felt like doing any computer work all week. I did go to see the surgeon-and he was pleased with his handiwork. Now he wants me to massage aqueous cream (or E45, or anything similar-greasy but moisturizing) into the wound, twice a day, religiously. Eeek!! I figured out that I could do that and still not look at myself in the mirror. I'm not quite ready for that traumatic experience (again) yet.
Andy is going to do a film night of Star Trek at the Unitarian Church. Star Trek. I love it-the original, I saw it when I was a kid, and it was hilarious: cardboard sets, terrible acting, directing and scripting. But it was the best of all of them. I can even do the Vulcan greeting. Does that make me a trekkie-or just a weirdo? I still love my t-shirt that says "Beam me up, Scotty, there's no intelligent life down here". I should wear it around here; of course, nobody would get the joke. In fact, nobody would know the difference. Sigh. Beam me to some area where there are intelligent human beings (how about New York?).
Well, I'm stuck here, so I might as well do the best of a bad job, as they say. And you can tell I've had a very depressed week. I've only been out of surgery four weeks-and I must admit I am feeling the effects, although the pain has lessened considerably. Still hurts to twist. And bend. And stretch. And move. And breathe. But I'm glad it is now and not four weeks ago. I would not want to relive the last four weeks!
In our culture, breasts are everything-for women, anyway. Women who are flat-chested are looked at with pity, it seems, while the double Ds get noticed. Of course they do! If you don't have brains, get big breasts. It's like a man and his penis. Size helps, but it isn't everything. I have known a few men who had the size but were totally useless (okay, well, only one, and that was about five years ago. He's an idiot; I was a bigger idiot for going out with him). Men even have enlargement surgery. Now that is really sad. Nobody is ever happy or satisfied with what they've got, are they?
I remember my ex-sister in law. She worked for a health authority in Devon, and she ordered all kinds of prosthetic devices. She would send us information about knees, hips, and so on. She once sent us something about a prosthesis called the "Jonas splint". Now, this is an absolutely true story (I always tell you true stories. Truth is often stranger than fiction-much stranger!).
So-the Jonas splint is an implant, and it works rather like an Anglepoise lamp. If a man has trouble, he gets this thing inserted, and when he wants to -um - function, shall we say? (in case any kids or anyone squeamish happen to be reading this)-he folds it up, does his thing, and then folds it down and puts it away. Really. Can you imagine how it would feel to have your partner say, excuse me while I restructure? I would be laughing so hard I wouldn't be able to have relations with anyone who has been fitted with a splint. I'd be covering my mouth to try to calm down, and I would probably be falling off the bed in hysterics. I certainly wouldn't be a good partner, that is for sure.
Now how did I get on the subject? Oh, yes- I was talking about not being satisfied with what we've got (I blame the Tamoxifen for my lapses in memory. It's a side effect. That is my story, and I am sticking to it). And I do have to say that most of my t-shirts fit better, now that I am flat. There is always a silver lining.
I saw Margaret, and we went over my choice to see a Macmillan (cancer) nurse next week, and to find a local support group (she approves, says it's a good way to recover). Then she weighed me. Oh, that was nasty. I was wearing jeans-and they weigh at least a pound! And I weighed in at under 50kgs-even with jeans-about 49 kilos. I got the riot act on that. I was ordered to eat more and gain weight, because I won't heal properly unless I practice good nutrition-etc, etc (I like being 49 kilos. I think the last time I weighed 49 kilos I was about 12 years old). So, I have to eat. And I did: yesterday I had a bag of potato wedges, and a lot of cheese...and salad...and I do tell lies about what and how much I eat, so...more good food. No Kettle Chips for awhile.
What can I say about that? Eat. May the forks be with you.
Andy is going to do a film night of Star Trek at the Unitarian Church. Star Trek. I love it-the original, I saw it when I was a kid, and it was hilarious: cardboard sets, terrible acting, directing and scripting. But it was the best of all of them. I can even do the Vulcan greeting. Does that make me a trekkie-or just a weirdo? I still love my t-shirt that says "Beam me up, Scotty, there's no intelligent life down here". I should wear it around here; of course, nobody would get the joke. In fact, nobody would know the difference. Sigh. Beam me to some area where there are intelligent human beings (how about New York?).
Well, I'm stuck here, so I might as well do the best of a bad job, as they say. And you can tell I've had a very depressed week. I've only been out of surgery four weeks-and I must admit I am feeling the effects, although the pain has lessened considerably. Still hurts to twist. And bend. And stretch. And move. And breathe. But I'm glad it is now and not four weeks ago. I would not want to relive the last four weeks!
In our culture, breasts are everything-for women, anyway. Women who are flat-chested are looked at with pity, it seems, while the double Ds get noticed. Of course they do! If you don't have brains, get big breasts. It's like a man and his penis. Size helps, but it isn't everything. I have known a few men who had the size but were totally useless (okay, well, only one, and that was about five years ago. He's an idiot; I was a bigger idiot for going out with him). Men even have enlargement surgery. Now that is really sad. Nobody is ever happy or satisfied with what they've got, are they?
I remember my ex-sister in law. She worked for a health authority in Devon, and she ordered all kinds of prosthetic devices. She would send us information about knees, hips, and so on. She once sent us something about a prosthesis called the "Jonas splint". Now, this is an absolutely true story (I always tell you true stories. Truth is often stranger than fiction-much stranger!).
So-the Jonas splint is an implant, and it works rather like an Anglepoise lamp. If a man has trouble, he gets this thing inserted, and when he wants to -um - function, shall we say? (in case any kids or anyone squeamish happen to be reading this)-he folds it up, does his thing, and then folds it down and puts it away. Really. Can you imagine how it would feel to have your partner say, excuse me while I restructure? I would be laughing so hard I wouldn't be able to have relations with anyone who has been fitted with a splint. I'd be covering my mouth to try to calm down, and I would probably be falling off the bed in hysterics. I certainly wouldn't be a good partner, that is for sure.
Now how did I get on the subject? Oh, yes- I was talking about not being satisfied with what we've got (I blame the Tamoxifen for my lapses in memory. It's a side effect. That is my story, and I am sticking to it). And I do have to say that most of my t-shirts fit better, now that I am flat. There is always a silver lining.
I saw Margaret, and we went over my choice to see a Macmillan (cancer) nurse next week, and to find a local support group (she approves, says it's a good way to recover). Then she weighed me. Oh, that was nasty. I was wearing jeans-and they weigh at least a pound! And I weighed in at under 50kgs-even with jeans-about 49 kilos. I got the riot act on that. I was ordered to eat more and gain weight, because I won't heal properly unless I practice good nutrition-etc, etc (I like being 49 kilos. I think the last time I weighed 49 kilos I was about 12 years old). So, I have to eat. And I did: yesterday I had a bag of potato wedges, and a lot of cheese...and salad...and I do tell lies about what and how much I eat, so...more good food. No Kettle Chips for awhile.
What can I say about that? Eat. May the forks be with you.
Monday 17 June 2013
No rolling over, no giving up
On Thursday it will be exactly four weeks since surgery. I am so glad it is now, and not three weeks ago!! It has taken an inordinate amount of time for me to begin to feel better. Of course, I overdid the exercise, and the lifting, and the carrying...inactivity, when forced on me, drives me somewhat up the wall.
I have had a great opportunity since the beginning of May, when the diagnosis of breast cancer nearly sent me into a state of complete shock. Really, this was an opportunity-and you can see that I always try to make some sense out of terrible things that happen, even when they don't make sense! Optimistic pessimist, or pessimistic optimist? Who knows? Who cares? There are some things that don't make any sense at all, but we still need to accept them, and deal with them as gracefully as possible-and find something that brings us comfort. I still find that a challenge, even with all the adversity I've had to handle in my life. But I'm working on it!!
I've had more than one period of bursting into tears and wanting to quit since the beginning of May. I can tell you, based on conversations with other cancer patients, that this is a very natural reaction. After all, who really wants to die? I feel like I haven't even begun to live yet. Cancer has pushed me into reassessing my life.
I went to the Unitarian church yesterday; it was my first real day out (I don't count hospital visits. Those aren't days out!!). I received such a warm welcome-I was quite surprised. Several people told me that they were given a weekly report by the women who visited me in the hospital...and I have to say that knowing you aren't alone helps you heal. Whether you have friends, or family, or religious beliefs (or none of the above), support from other people is really important.
Did I tell you about Liz Macartney, the UKPIPS charity founder? I worked as a volunteer for the charity since last year. When I told her that I had breast cancer, she wrote that it's a bummer, and that she had a terrible headache, and she really overdid it. Obviously, her headache trumped my cancer!! LOL! She was not at all pleasant-and I never heard a word from her while I was in the hospital. My nurse said that Liz is so self-involved, she doesn't care about anyone but herself. I read about her headache, and I just laughed. Really, I just laughed. Then, not a peep out of her. Suddenly, I got a text from her last week: how are you? That was it: how are you? So I ignored it. I've decided that, if I want to be of any help to anyone, it won't be to someone like that!!
Now, I mention this because I had time-as I said-to reassess my life, and I decided to dump the dross, bin the dead wood, drop people from my address book-anyone who is very negative, or psychotic, or who moans all the time, is out. I moan, but I don't do it all the time. I've always used humor as a coping mechanism, and that is just part of my personality. So is having a little moan, but hibernating when things get really bad, because I feel that it is unfair to my friends to constantly complain (that is why I still have friends. I think!).
I said the other day that I heartily recommend celebrating the good things by doing or buying something you will always remember-like my red teapot of success and courage!! I also heartily recommend that anyone who has cancer-or any other disease or disorder or condition that adversely affects life-do a little reassessment meditation. There are some people we can't dump, even though we would love to do so!! But we can change the way we deal with them, and change our attitude toward them. Of course, we could strangle them, but that might be a little excessive! There are some fights that just aren't worth the toll they take on our health. And I've had more than a few of those, so believe me when I say I know this.
Watch funny movies. Eat lots of chocolate. And never underestimate the power of Kettle Chips!!
I have had a great opportunity since the beginning of May, when the diagnosis of breast cancer nearly sent me into a state of complete shock. Really, this was an opportunity-and you can see that I always try to make some sense out of terrible things that happen, even when they don't make sense! Optimistic pessimist, or pessimistic optimist? Who knows? Who cares? There are some things that don't make any sense at all, but we still need to accept them, and deal with them as gracefully as possible-and find something that brings us comfort. I still find that a challenge, even with all the adversity I've had to handle in my life. But I'm working on it!!
I've had more than one period of bursting into tears and wanting to quit since the beginning of May. I can tell you, based on conversations with other cancer patients, that this is a very natural reaction. After all, who really wants to die? I feel like I haven't even begun to live yet. Cancer has pushed me into reassessing my life.
I went to the Unitarian church yesterday; it was my first real day out (I don't count hospital visits. Those aren't days out!!). I received such a warm welcome-I was quite surprised. Several people told me that they were given a weekly report by the women who visited me in the hospital...and I have to say that knowing you aren't alone helps you heal. Whether you have friends, or family, or religious beliefs (or none of the above), support from other people is really important.
Did I tell you about Liz Macartney, the UKPIPS charity founder? I worked as a volunteer for the charity since last year. When I told her that I had breast cancer, she wrote that it's a bummer, and that she had a terrible headache, and she really overdid it. Obviously, her headache trumped my cancer!! LOL! She was not at all pleasant-and I never heard a word from her while I was in the hospital. My nurse said that Liz is so self-involved, she doesn't care about anyone but herself. I read about her headache, and I just laughed. Really, I just laughed. Then, not a peep out of her. Suddenly, I got a text from her last week: how are you? That was it: how are you? So I ignored it. I've decided that, if I want to be of any help to anyone, it won't be to someone like that!!
Now, I mention this because I had time-as I said-to reassess my life, and I decided to dump the dross, bin the dead wood, drop people from my address book-anyone who is very negative, or psychotic, or who moans all the time, is out. I moan, but I don't do it all the time. I've always used humor as a coping mechanism, and that is just part of my personality. So is having a little moan, but hibernating when things get really bad, because I feel that it is unfair to my friends to constantly complain (that is why I still have friends. I think!).
I said the other day that I heartily recommend celebrating the good things by doing or buying something you will always remember-like my red teapot of success and courage!! I also heartily recommend that anyone who has cancer-or any other disease or disorder or condition that adversely affects life-do a little reassessment meditation. There are some people we can't dump, even though we would love to do so!! But we can change the way we deal with them, and change our attitude toward them. Of course, we could strangle them, but that might be a little excessive! There are some fights that just aren't worth the toll they take on our health. And I've had more than a few of those, so believe me when I say I know this.
Watch funny movies. Eat lots of chocolate. And never underestimate the power of Kettle Chips!!
Saturday 15 June 2013
The teapot of courage and success
This was another dire-and testing-week. I forced myself to look at the incision-which is still painful-so I made an appointment at the surgery. I discovered that Margaret was the duty doctor, so that made me happy.
Oh, well...after a wait of an hour and a half (surely a record for waiting in a GP's office!), I had to briefly tell her what was going on. And I walked in the door and burst into tears (such a crybaby!!). She examined the wound and said she thought everything would settle down, but it will take six months before all the lumps and puckering would finally clear. No infection, she said-just lumps filled with fluid, and that is normal. How am I supposed to know what is "normal"? Errr...pardon me, but I have only just had this surgery, so I have no clue.
On Thursday I had to go to the London for my quarterly bloodletting-and Matt was coming in to see me and check on how I am doing. I showed both John and Matt the God-awful incision, and they were both great. They were very supportive, and sympathetic. Nobody threw up at the sight, which made me feel better!
I have discovered how to live with this vicious operation and the mutilation involved. I just won't look at it. Really, I know it's there, and in the shower I wash very carefully so I don't yank out any stitches or make a mess. Simple: I don't look. It isn't denial, it is simply that I don't want to see what isn't there. Perhaps later on I will feel differently-when the stitches have dissolved, all the lumpiness and dimples and whatever have cleared. But now? I won't allow it to upset me. I've got other things I need to worry about! At least cancer isn't one of them. Personally I would rather not have cancer, so I consider myself lucky. Very lucky. If I'd waited a bit longer, the outcome would have been very different.
Ah, the teapot! Well, I wrote that on the day I got the verdict I bought a teapot so I would always remember the day I was told that the cancer hadn't spread, that I wouldn't need chemotherapy or radiation, and that I will just be checked for the next five years (and have to take Tamoxifen, which is a small price to pay, believe me!).
Sitting on my dining room table is my red ceramic teapot. When I look at it, I remember the feeling of knowing that I am clear of breast cancer. So my little teapot is my way of celebrating the relief-and good news.
For some reason, people don't seem to celebrate things anymore. Or-they celebrate with a bottle of wine, or champagne, or go out for a nice dinner-and that's fine, but you eat and/or drink, and the moment has passed and it's gone. Why not have something that will remind you of the moment, of the achievement, of the success-something you can look at for a long time and remember the feeling of relief, or joy, success, whatever it is? The little picture you bought in a flea shop, or a garage sale, that reminds you of your first date. The special stapler of getting the job you wanted so desperately (and nobody is suggesting that you need to go and buy a Monet, or a gold plated stapler, either! If you can afford a real Monet, let me know, and I will go shopping with you!). The china cup and saucer that signify your divorce (if you initiated it, of course, and are delirious with joy for getting rid of that tosser once and for all).
You get the idea: celebrate. Mark your success with something tangible, something you can look at-and, if necessary, throw at the offending party some time in the future...really, celebrate with something that has meaning, not just a meal or a drink. Something that will last (and some things last longer than the relationship you are marking, so you can always break them later on!!).
My teapot says I'm free of cancer, and I don't need chemo or radiation, just to be vigilant, because it can return. But I won't focus on that possibility; I will focus on the now. And the now says: I'm clear. I wish everyone could say that...
Some of the Unitarian congregation came to see me while I was in the hospital. One man, called David, was a cameraman and made some short films. He's an older gentleman, and seemed to have lived a very interesting life. He asked me whether I wanted to help other people who have been through this cancer ordeal. I said, of course, I would help anyone who had (or has) cancer, or CVID, or gentamicin poisoning-because I have been through it all and I know how it feels, and how hard it is to copy sometimes. He then asked if I would talk to a camera. I would sit in a chair, just talk, he would film it-and then put it on YouTube. I'm thinking about it. I really am thinking about it. At the moment, I am at the thinking stage. Hmmm...
Oh, well...after a wait of an hour and a half (surely a record for waiting in a GP's office!), I had to briefly tell her what was going on. And I walked in the door and burst into tears (such a crybaby!!). She examined the wound and said she thought everything would settle down, but it will take six months before all the lumps and puckering would finally clear. No infection, she said-just lumps filled with fluid, and that is normal. How am I supposed to know what is "normal"? Errr...pardon me, but I have only just had this surgery, so I have no clue.
On Thursday I had to go to the London for my quarterly bloodletting-and Matt was coming in to see me and check on how I am doing. I showed both John and Matt the God-awful incision, and they were both great. They were very supportive, and sympathetic. Nobody threw up at the sight, which made me feel better!
I have discovered how to live with this vicious operation and the mutilation involved. I just won't look at it. Really, I know it's there, and in the shower I wash very carefully so I don't yank out any stitches or make a mess. Simple: I don't look. It isn't denial, it is simply that I don't want to see what isn't there. Perhaps later on I will feel differently-when the stitches have dissolved, all the lumpiness and dimples and whatever have cleared. But now? I won't allow it to upset me. I've got other things I need to worry about! At least cancer isn't one of them. Personally I would rather not have cancer, so I consider myself lucky. Very lucky. If I'd waited a bit longer, the outcome would have been very different.
Ah, the teapot! Well, I wrote that on the day I got the verdict I bought a teapot so I would always remember the day I was told that the cancer hadn't spread, that I wouldn't need chemotherapy or radiation, and that I will just be checked for the next five years (and have to take Tamoxifen, which is a small price to pay, believe me!).
Sitting on my dining room table is my red ceramic teapot. When I look at it, I remember the feeling of knowing that I am clear of breast cancer. So my little teapot is my way of celebrating the relief-and good news.
For some reason, people don't seem to celebrate things anymore. Or-they celebrate with a bottle of wine, or champagne, or go out for a nice dinner-and that's fine, but you eat and/or drink, and the moment has passed and it's gone. Why not have something that will remind you of the moment, of the achievement, of the success-something you can look at for a long time and remember the feeling of relief, or joy, success, whatever it is? The little picture you bought in a flea shop, or a garage sale, that reminds you of your first date. The special stapler of getting the job you wanted so desperately (and nobody is suggesting that you need to go and buy a Monet, or a gold plated stapler, either! If you can afford a real Monet, let me know, and I will go shopping with you!). The china cup and saucer that signify your divorce (if you initiated it, of course, and are delirious with joy for getting rid of that tosser once and for all).
You get the idea: celebrate. Mark your success with something tangible, something you can look at-and, if necessary, throw at the offending party some time in the future...really, celebrate with something that has meaning, not just a meal or a drink. Something that will last (and some things last longer than the relationship you are marking, so you can always break them later on!!).
My teapot says I'm free of cancer, and I don't need chemo or radiation, just to be vigilant, because it can return. But I won't focus on that possibility; I will focus on the now. And the now says: I'm clear. I wish everyone could say that...
Some of the Unitarian congregation came to see me while I was in the hospital. One man, called David, was a cameraman and made some short films. He's an older gentleman, and seemed to have lived a very interesting life. He asked me whether I wanted to help other people who have been through this cancer ordeal. I said, of course, I would help anyone who had (or has) cancer, or CVID, or gentamicin poisoning-because I have been through it all and I know how it feels, and how hard it is to copy sometimes. He then asked if I would talk to a camera. I would sit in a chair, just talk, he would film it-and then put it on YouTube. I'm thinking about it. I really am thinking about it. At the moment, I am at the thinking stage. Hmmm...
Monday 10 June 2013
the good, the bad and the ugly-and the very, very lucky-sliced and diced
This has been a week for the record books-another of those weeks! I was in terrible pain, and when I got to the hospital on Tuesday for the verdict on the histology results, I realized just how anxious, apprehensive and frightened I was. I had kept telling myself that this was just a cyst, not cancer-so now I have a great deal of trouble trusting my intuition and my judgment.
I decided to be very extravagant, and buy something ridiculously expensive to mark this day. If the verdict was a good one, I would look at it and remember how lucky I am. So I bought a red china teapot at the tea shop in Highgate. Crazily expensive, but more permanent than, say, dinner at an expensive restaurant, or a bottle of wine or bubbly.
Mr. Tan was almost on time. He was also very to the point. The sentinel node, he said, was clear. There is no need to remove any more lymph nodes. This was an aggressive cancer, and if I had waited much longer, he said, the results would have been very different. There was also something on the left side, so he was pleased with the fact that we had both decided on a bilateral mastectomy.
The bottom line: the cancer is gone, I do not need chemotherapy or radiation, I only need to be on the nasty drug called Tamoxifen for the next five years. No more cancer. And, of course, no more breasts, either. the little steri-strips came off, in about seven weeks I can have prostheses (silicone inserts to put in my bra to make it look like I have something there), and he wants to see me in six months. In the interim, I will need to be checked and double-checked at the clinic. And in a year I can have reconstruction if I want it. I have some time to think about whether I want more surgery!!
I can tell you how happy I was after the consultation-how relieved, too. So Tuesday was pretty good, but I had to collect the first month's supply from the hospital pharmacy-and that was an hour and a half's wait, so it was a very late day. I decided to blog on Wednesday, although I did call and text everyone who was also awaiting the verdict.
On Wednesday everything changed-and that is why I haven't been online to blog or email since last week. On Wednesday I decided to look in the mirror-and I was so traumatized by what I saw that I couldn't speak to anyone all week. I couldn't sleep. I had to force myself to eat. I looked at my chest in the mirror and finally saw how badly mutilated I was. I looked like slashers had been at me (I really have to stop watching those Halloween films. And Dexter. Well-maybe Dexter is an exception!).
The lines across my chest aren't straight-but then, Tan had to remove both breasts, and one is always a bit larger than the other, so there won't be straight lines. The scar begins just behind my left armpit and carries on to the breastbone, and then begins again and goes all the way to just behind my right armpit. Mr. Tan told me there would be "dimpling" that would go away in about six months. What I saw wasn't dimpling. What I saw were great big lumps of tissue-and I mean big, and I mean lumps-held by the sutures. No nipples, of course, but incredibly ugly. I looked, as I had really avoided doing all the time I was in the hospital, and all the time I had to wash using a basin and a cloth, so I didn't wet the dressing. And I cried.
I knew I had to look-and the good is the fact that I don't have cancer, and I don't need more treatment (except the Tamoxifen, which has very nasty side effects-but cancer isn't one of them). The bad is the pain I have had since the surgery, and the fact that I am still on painkillers (but I took myself off the morphine when I got home), although I will be going off those very soon. The lucky? No chemotherapy, no radiation, no cancer. No cancer. How lucky I am to have gone for a checkup when I did-we caught it just in time, before it hit the lymph nodes. How lucky is that?
But the ugly-the mangled-the mutilated...I remember how I looked before the surgery, and I look at what used to be my chest and all I can see is something that has been sliced and diced. If that isn't completely traumatizing, I don't know what is.
I've always used humor as a coping mechanism, although it completely deserted me after the gentamicin poisoning. I fought so hard to get some form of balance back, although I am aware that I won't get all of it back, since the mechanism has been destroyed. But-after two years I finally accepted my fate, although I didn't stop fighting. And now? This is something completely different. This is cancer-this WAS cancer.
On Friday my doc pointed out that I need to deal with the loss, the mourning of part of my body that is gone, the fact that I am cancer free-at least for the moment. Macmillan, the cancer people, made public the fact that by 2020 (only six and a half years away!!), 48% of the population of the UK will have some form of cancer. That is big. Very big. I did my part now, and I've been there, done it, got the t-shirt (which I can't fill anymore!), and don't want to ever do it again. I said: born with CVID, all the chest problems because of CVID, the probability of other types of cancer (CVID again), gentamicin and no balance system, so I wobble and occasionally fall over, and now a bilateral mastectomy, so no boobs either. What a catch!! I said. And her response was honest and practical: relationships are formed because of a connection. If a man can't see any further than body parts, he isn't worth my time or my emotions. He's too shallow to deserve me. That made perfect sense.
I'm waiting a few more days, until I have been out of hospital two weeks (Friday) and until I feel a bit less pain. Then I am contacting Macmillan to find a local support group. Only people who have gone through the same thing can understand the way I feel-so I will find them and join them, because I know I am not alone.
It helps that I have a friend who is like a sister (but without the sibling rivalry and the fighting), who has been incredibly supportive. But whether you have friends, or family, or nobody-just keep fighting. I won't quit-even after all I've been through (and that is a hell of a lot), I will not give up, roll over and wait to die, go to Dignitas, become a hermit...I will keep on fighting. Aren't I a big pain in the ass!
I decided to be very extravagant, and buy something ridiculously expensive to mark this day. If the verdict was a good one, I would look at it and remember how lucky I am. So I bought a red china teapot at the tea shop in Highgate. Crazily expensive, but more permanent than, say, dinner at an expensive restaurant, or a bottle of wine or bubbly.
Mr. Tan was almost on time. He was also very to the point. The sentinel node, he said, was clear. There is no need to remove any more lymph nodes. This was an aggressive cancer, and if I had waited much longer, he said, the results would have been very different. There was also something on the left side, so he was pleased with the fact that we had both decided on a bilateral mastectomy.
The bottom line: the cancer is gone, I do not need chemotherapy or radiation, I only need to be on the nasty drug called Tamoxifen for the next five years. No more cancer. And, of course, no more breasts, either. the little steri-strips came off, in about seven weeks I can have prostheses (silicone inserts to put in my bra to make it look like I have something there), and he wants to see me in six months. In the interim, I will need to be checked and double-checked at the clinic. And in a year I can have reconstruction if I want it. I have some time to think about whether I want more surgery!!
I can tell you how happy I was after the consultation-how relieved, too. So Tuesday was pretty good, but I had to collect the first month's supply from the hospital pharmacy-and that was an hour and a half's wait, so it was a very late day. I decided to blog on Wednesday, although I did call and text everyone who was also awaiting the verdict.
On Wednesday everything changed-and that is why I haven't been online to blog or email since last week. On Wednesday I decided to look in the mirror-and I was so traumatized by what I saw that I couldn't speak to anyone all week. I couldn't sleep. I had to force myself to eat. I looked at my chest in the mirror and finally saw how badly mutilated I was. I looked like slashers had been at me (I really have to stop watching those Halloween films. And Dexter. Well-maybe Dexter is an exception!).
The lines across my chest aren't straight-but then, Tan had to remove both breasts, and one is always a bit larger than the other, so there won't be straight lines. The scar begins just behind my left armpit and carries on to the breastbone, and then begins again and goes all the way to just behind my right armpit. Mr. Tan told me there would be "dimpling" that would go away in about six months. What I saw wasn't dimpling. What I saw were great big lumps of tissue-and I mean big, and I mean lumps-held by the sutures. No nipples, of course, but incredibly ugly. I looked, as I had really avoided doing all the time I was in the hospital, and all the time I had to wash using a basin and a cloth, so I didn't wet the dressing. And I cried.
I knew I had to look-and the good is the fact that I don't have cancer, and I don't need more treatment (except the Tamoxifen, which has very nasty side effects-but cancer isn't one of them). The bad is the pain I have had since the surgery, and the fact that I am still on painkillers (but I took myself off the morphine when I got home), although I will be going off those very soon. The lucky? No chemotherapy, no radiation, no cancer. No cancer. How lucky I am to have gone for a checkup when I did-we caught it just in time, before it hit the lymph nodes. How lucky is that?
But the ugly-the mangled-the mutilated...I remember how I looked before the surgery, and I look at what used to be my chest and all I can see is something that has been sliced and diced. If that isn't completely traumatizing, I don't know what is.
I've always used humor as a coping mechanism, although it completely deserted me after the gentamicin poisoning. I fought so hard to get some form of balance back, although I am aware that I won't get all of it back, since the mechanism has been destroyed. But-after two years I finally accepted my fate, although I didn't stop fighting. And now? This is something completely different. This is cancer-this WAS cancer.
On Friday my doc pointed out that I need to deal with the loss, the mourning of part of my body that is gone, the fact that I am cancer free-at least for the moment. Macmillan, the cancer people, made public the fact that by 2020 (only six and a half years away!!), 48% of the population of the UK will have some form of cancer. That is big. Very big. I did my part now, and I've been there, done it, got the t-shirt (which I can't fill anymore!), and don't want to ever do it again. I said: born with CVID, all the chest problems because of CVID, the probability of other types of cancer (CVID again), gentamicin and no balance system, so I wobble and occasionally fall over, and now a bilateral mastectomy, so no boobs either. What a catch!! I said. And her response was honest and practical: relationships are formed because of a connection. If a man can't see any further than body parts, he isn't worth my time or my emotions. He's too shallow to deserve me. That made perfect sense.
I'm waiting a few more days, until I have been out of hospital two weeks (Friday) and until I feel a bit less pain. Then I am contacting Macmillan to find a local support group. Only people who have gone through the same thing can understand the way I feel-so I will find them and join them, because I know I am not alone.
It helps that I have a friend who is like a sister (but without the sibling rivalry and the fighting), who has been incredibly supportive. But whether you have friends, or family, or nobody-just keep fighting. I won't quit-even after all I've been through (and that is a hell of a lot), I will not give up, roll over and wait to die, go to Dignitas, become a hermit...I will keep on fighting. Aren't I a big pain in the ass!
Sunday 2 June 2013
Home is where the hovel is
I got out of the hospital on Friday evening- I felt like I'd been reprieved!! I was too tired to blog. In fact, I was too tired to eat!! I think I managed a cup of tea and a few glasses of water, and had an early night.
My last few days in the hospital were-well, interesting, and enlightening, and I'm surprised I haven't copped it from food poisoning. People kept asking why I wasn't eating-I would point to the food and say, by way of an obvious answer: "would you"? It's so nice to be able to eat things I recognize!!
A nurse came in on Thursday and told me that she knew exactly how I felt. I asked whether she'd had a double mastectomy. If you had seen her face!! She was confused...she said, no, she'd had knee surgery. Cartilage. I couldn't be bothered to even argue the point. I'm past arguing the fact that the only people who would know how I was feeling would be the people who had actually been through the same surgery. Lesson learned: never tell someone you know how they feel unless you have been there yourself. Should be obvious-but it isn't. People try to be sympathetic, they only succeed in pissing me off!!
Something that really got my back up was the slogan thing. Every cause has a slogan. Fine, if it is an intelligent one! But one of the cancer charities has now decided to put "cancer, we are coming to get you" on t-shirts. Is that a bit dumb, or what? We're coming to get you-and then what? Take you shopping? To the movies? To lunch? Does it make sense? No, it just stinks of desperation and false bravado. I can say that-since it is all about breast cancer, and now I can say been there, done it, have the huge scars and black and blues to prove it. And I'm still not finished; I won't have the histology report until Tuesday afternoon, so I don't know if I will need further treatment. I only know that I will need to take tablets every day for the next five years (as if I'm not taking enough already; so what's one more to add to the mix? Turn me upside down, shake, and I will rattle).
Oh, and the other inane t-shirt reads "cancer, we are taking you down". Down where, exactly? To the pub? Excuse me!! It's cancer that comes to "get us", and "take us down", not the other way around. According to the oncologist, 38% of people in this country are living with some form of cancer. That's a lot of people!! Sounds pretty much like in the cancer stakes, it's 1-0, and cancer is ahead.
If they are going to have a slogan, it seems to me that it should be an intelligent one. It should be short and sweet (well, maybe not sweet), should be brief, honest, and tell it like it is (like me, but without the sweet!LOL). Do I have one? Well, obviously!! And here is one I prepared earlier: Cancer sucks!!
That is it, that is my slogan. Why? Because it does, that's why. And everyone knows what it means. I think I should have that put on a t-shirt. Maybe on tea towels. Oven gloves. Tracksuits. Calendars. And, of course, let us not forget the bumper sticker!!! What a great bumper sticker that would make. Everyone would have one on their car. It beats the hell out of "I just made it through eigth grade", or "I got through sixth form and didn't stab anyone", or "I live in Essex. Don't drive near me, I've got the IQ and driving ability of a two year old". Of course, there is everyone's favorite: "eat horsemeat. What do you think happens to horses when they die? What do you think is in your burger?"
See that? Another problem solved!!
Anybody who might have considered robbing my flat would have thought that someone had already robbed it before them. My place looks like it has been hit by a couple of grenades. It should be condemned. Actually, there is so much damp and mould, it should have been condemned years ago. I wonder how many people turned it down before I had to take it (take it or risk staying in a lovely, privately rented duplex flat with stairs I kept falling down-risking skull fractures, so there's the answer as to why).
I just want to blitz every room, and start throwing stuff out, putting other stuff away, making charity shops very happy with so much stuff I neither want nor use. But I am only one week out of surgery, so I have been warned to behave myself and not lift anything heavier than a lettuce leaf (dressing on it is okay, I presume).
I had a bit of a funny turn last night, and I'm sure that most (maybe all) women who have had mastectomies feel the same way at some time or another: I got very depressed, and I looked at myself in the mirror (always unwise anyway) and decided that I have been mutilated. For life. It was a very unpleasant feeling. I have really tried very hard to be upbeat and optimistic, and the feeling of "oh my god" came out of the blue and hit hard. I decided to put it down to the fact that I took myself off morphine when I left the hospital. They gave me a week's supply (and it was only 5ml, not like I was shooting up), but I decided not to take any. It helped the pain, but made me glassy-eyed. I'm dizzy enough as it is, I don't need more help!!
So, there we go...I've started walking more, and I will do some more, then - I'm going to lie down!! After all, I only had major surgery last week. I had cancer.
And, unless someone tells me differently on Tuesday, I don't have it any more!! Yippee!!!!
My last few days in the hospital were-well, interesting, and enlightening, and I'm surprised I haven't copped it from food poisoning. People kept asking why I wasn't eating-I would point to the food and say, by way of an obvious answer: "would you"? It's so nice to be able to eat things I recognize!!
A nurse came in on Thursday and told me that she knew exactly how I felt. I asked whether she'd had a double mastectomy. If you had seen her face!! She was confused...she said, no, she'd had knee surgery. Cartilage. I couldn't be bothered to even argue the point. I'm past arguing the fact that the only people who would know how I was feeling would be the people who had actually been through the same surgery. Lesson learned: never tell someone you know how they feel unless you have been there yourself. Should be obvious-but it isn't. People try to be sympathetic, they only succeed in pissing me off!!
Something that really got my back up was the slogan thing. Every cause has a slogan. Fine, if it is an intelligent one! But one of the cancer charities has now decided to put "cancer, we are coming to get you" on t-shirts. Is that a bit dumb, or what? We're coming to get you-and then what? Take you shopping? To the movies? To lunch? Does it make sense? No, it just stinks of desperation and false bravado. I can say that-since it is all about breast cancer, and now I can say been there, done it, have the huge scars and black and blues to prove it. And I'm still not finished; I won't have the histology report until Tuesday afternoon, so I don't know if I will need further treatment. I only know that I will need to take tablets every day for the next five years (as if I'm not taking enough already; so what's one more to add to the mix? Turn me upside down, shake, and I will rattle).
Oh, and the other inane t-shirt reads "cancer, we are taking you down". Down where, exactly? To the pub? Excuse me!! It's cancer that comes to "get us", and "take us down", not the other way around. According to the oncologist, 38% of people in this country are living with some form of cancer. That's a lot of people!! Sounds pretty much like in the cancer stakes, it's 1-0, and cancer is ahead.
If they are going to have a slogan, it seems to me that it should be an intelligent one. It should be short and sweet (well, maybe not sweet), should be brief, honest, and tell it like it is (like me, but without the sweet!LOL). Do I have one? Well, obviously!! And here is one I prepared earlier: Cancer sucks!!
That is it, that is my slogan. Why? Because it does, that's why. And everyone knows what it means. I think I should have that put on a t-shirt. Maybe on tea towels. Oven gloves. Tracksuits. Calendars. And, of course, let us not forget the bumper sticker!!! What a great bumper sticker that would make. Everyone would have one on their car. It beats the hell out of "I just made it through eigth grade", or "I got through sixth form and didn't stab anyone", or "I live in Essex. Don't drive near me, I've got the IQ and driving ability of a two year old". Of course, there is everyone's favorite: "eat horsemeat. What do you think happens to horses when they die? What do you think is in your burger?"
See that? Another problem solved!!
Anybody who might have considered robbing my flat would have thought that someone had already robbed it before them. My place looks like it has been hit by a couple of grenades. It should be condemned. Actually, there is so much damp and mould, it should have been condemned years ago. I wonder how many people turned it down before I had to take it (take it or risk staying in a lovely, privately rented duplex flat with stairs I kept falling down-risking skull fractures, so there's the answer as to why).
I just want to blitz every room, and start throwing stuff out, putting other stuff away, making charity shops very happy with so much stuff I neither want nor use. But I am only one week out of surgery, so I have been warned to behave myself and not lift anything heavier than a lettuce leaf (dressing on it is okay, I presume).
I had a bit of a funny turn last night, and I'm sure that most (maybe all) women who have had mastectomies feel the same way at some time or another: I got very depressed, and I looked at myself in the mirror (always unwise anyway) and decided that I have been mutilated. For life. It was a very unpleasant feeling. I have really tried very hard to be upbeat and optimistic, and the feeling of "oh my god" came out of the blue and hit hard. I decided to put it down to the fact that I took myself off morphine when I left the hospital. They gave me a week's supply (and it was only 5ml, not like I was shooting up), but I decided not to take any. It helped the pain, but made me glassy-eyed. I'm dizzy enough as it is, I don't need more help!!
So, there we go...I've started walking more, and I will do some more, then - I'm going to lie down!! After all, I only had major surgery last week. I had cancer.
And, unless someone tells me differently on Tuesday, I don't have it any more!! Yippee!!!!
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