(no subject)

[scottishlass]

Some ppl might wonder why I can write so casually about my breast cancer treatment and that I go out and about, walking the dogs, going shopping etc. I think I have to make something clear. I have lived with the illness or disease or whatever you want to call it, for a long time now. I'm pissed off at cancer but I won't let a bloody illness dictate my life or take away such a small pleasure like walking my dogs (even if it is more like crawling rather than walking actually). Oh and no, I'm not faking it as someone pointed out to me in an email (which enthused this whole post). I wish I was faking it, then I would be healthy and strong and not ill, thank you very much.

I could make an lj-cut here, but I decided against it, because ppl shoudl know about what it means to have breast cancer. It can happen to anyone.

Anyway, I have stage 4 breast cancer, meaning without immediate treatment I can die. Period. BUT! Breast cancer is not like breast cancer, there is hormonal, genetical and bone-based (where the tumors sit more on the rips and diaphragm than the actual breast themselves) forms of mamma carcinoma, the most common being the genetical and bone-based ones which are also the most fatal ones.
Hormonal breast cancer make about 2% to 4% (depending on the research studies from different countries) of all breast cancer patients. These women (and some few men) have difficulties with their hormonal set-up. I'm one of them.

Back in 1996 I got my first prescription of anti-baby pills. Unfortunately, my then gynecologist didn't make a hormonal test to see if I can actually use this particular brand of pill. As she didn't make the test and I didn't know that there should be a test, I took the pill for three months (!!), never knowing that I was fertile despite the pill because my hormonal make-up already has a high production of estrogen and the pill actually increased said production. Due to some obscure genetic defect thanks to my biological father I have a high production of estrogen and calcium in my body already. During puberty, my bones didn't all grow in length but a lot (fingers, toes, torso/ribs) grew in circumference rather than length. With this and the pill effecting the hypothalamus and hence the ovarian steroids (like estrogen) the calcium in my mamma ovaries plus the additional estrogen produced created breast cancer. It is what is called estrogen-receptor positive cancer, it means with more and more estrogen being produced carcinoma can grow both in the breasts but also in the vulva.
Good thing is, not all cases (about 80%) are fatal. With the right hormonal therapy, cancer cell suppressing medicine and cortisone based pills, you can actually live with cancer for years, as I'm doing since 1996.

Now you could ask, why not remove the vulva and the breasts? A question I have asked my doctors again and again with getting the same ol' answer. Once these particular areas in the body are removed, the estrogen plus the high calcium levels will find other areas, mainly bones. It will spread from a mere mamma carcinoma to all kinds of cancers, including osteosarcoma (malignant bone cancer) or multiple myeloma (cancer of plasma cells, leukemia etc.)
So ... I should count myself lucky in a way. I have been going on and off weak chemo therapies for 11 years now, with the current now being my fifth. If I can live another 11 years with this kind of shit, then okay so be it.

Oh and btw, I have removed the person who sent me the email from my flist and I would appreciate her doing the same. I'm sorry to hear her aunt died of breast cancer, but obviously she had a different form than me. Telling me that I was faking it as I'm obviously not dead already was bad taste and even though it didn't hurt me, it made me very sad. I know grief is talking here, but you don't know me as I don't know you in RL. I can't act as your emotional punching ball.


Having said all that, all I can do is to ask everyone on my flist to go to at least yearly breast cancer prevention check-ups. It can save lives!!

Comments

[plazmah.livejournal.com]

Telling me that I was faking it as I'm obviously not dead already

D:

That is so wrong on so many levels.

[padawansguide.livejournal.com]

I can't believe you got accused of faking it. I know the internet can make us all cynical, but really, that's terrible. You seem to have a really good attitude about a really crappy situation, and I admire you for it! Hang in there with your treatments!

[calixa.livejournal.com]

I'm sorry to hear that. People can be terribly awful sometimes. Eleven years of chemo and not letting the illness get to you, that takes a lot of strength and I admire you for it. Which is why you should not have to deal with this kind of bullshit *hug*

[crimsonredd.livejournal.com]

Having said all that, all I can do is to ask everyone on my flist to go to at least yearly breast cancer prevention check-ups. It can save lives!!
Yup, that's why I have my check-ups as advised by our doctor to have it every 6 mos.

Telling me that I was faking it as I'm obviously not dead already was bad taste and even though it didn't hurt me, it made me very sad.

Looks like she's taking it out on you ... That's indeed sad.

[wishkey.livejournal.com]

Jesus Christ on a crutch, what the hell is the

matter

with people? I'd love to beat the crap out of whoever sent that email, but frankly, you are more than capable of doing that yourself.

The whole point of fighting a life-threatening disease is because the life you live is something you enjoy, and don't want to lose. So why give up any part of that life just because you are sick, if you are still able to live and enjoy?

I was actually thinking about this today, because a major presidential cadidate announced today that his wife's breast cancer has returned, but that he fully intended to continue running for US office. I agree with the couple's decision: you don't let the cancer dictate how you live your life. If you do, the cancer has won. If you do, is the life you have the life you want to live? What is the point?

People suck. With all the things wrong with people in the world, the lack of empathy is what saddens me the most. Is it really easier to call someone a liar than to put themselves in someone else's place and see how things are, how things feel?

You are stong, defiant -- the very essence of a survivor, and I look up to you. You keep on being who you are and doing what you do!

[miss-dian.livejournal.com]

All I can say is that I find it absolutely mind boggling that someone in your flist would say such a horrid thing.

Though we do not know each other in RL, much love and respect to you, Una :)

[dangermousie.livejournal.com]

It's horrible someone said that! Wow.

I am always a little lost what to reply to your posts dealing with illness, because I am so impressed by the way you deal with it, but I have no idea how to phrase it. But I am. I am incredibly impressed.

[scottishlass.livejournal.com]

It's okay, I know what you mean. Me ranting about it is just my way of getting it off my chest. His Hubbiness™ is the Prince of Denial and I can't talk to him, otherwise I wouldn't post in my LJ.

And dangermousie thank you for giving me a great way of escapism. Your dorama metas last year gave me something new and shiny to look forward to.

*hugs*

[scottishlass.livejournal.com]

I know. But I guess ppl are that way. And I think there was mostly grief speaking out of her but still it bugged me. But I'm glad I got it all off my chest. If for nothing else, I have made my flist more aware of cancer and that you all will go to check ups.

[scottishlass.livejournal.com]

I will, M. A long time ago I made myself promise that I rather die from the proverbial piano falling down on me from the eighth floor than from a crappy illness such as cancer. And 11 years is a long time getting used to it. I had to get used to it, and somehow I also see it as some sort of challenge to make a better person out of me. Damn I was such a selfish bitch once but the whole thing sure was a reality check.

[scottishlass.livejournal.com]

Thank you :)
Well, on some perverted level I can understand the person, she lost her aunt to cancer and seeing someone else seemingly successfully battling it, might got her down. Still ... being on the receiving end of it feels shitty.

[scottishlass.livejournal.com]

Even better!! half year check ups are good and I'm glad you do so.
Unfortunately, a lot of folks shy away from them still, so once a year is the most they can manage and depending on the country they live in they have to pay extra for these check-ups.

I can see where she is coming from in some sort of way. She lost her aunt so she needs someone to rant about. I guess I was just very convenient, but I also think she has a screw loose somewhere (something I already noticed when I first friended her a couple of weeks back, she didn't seem to come from any fandom I'm in) ... oh well, I have removed her and I hope that was the end of it.

[scottishlass.livejournal.com]

So why give up any part of that life just because you are sick, if you are still able to live and enjoy?
Exactly!!! Now during the chemo my life is already really restricted. Friends can't just come by with their families without having a whole list of questions to answer. My two god-daughters want to see me but as they are either having a cold or a measle threat is at their school, we can only talk on the phone. Now they are old enough to be pissed off by that and I have a hard time to make them realise that any visit of them could be really bad for me.
That I do a Michael Jackson and walk around with these funny mouth and nose protectors leaves me wide open for ridicule, but damn if I sit around on my fat ass at home and see life passing by.
Of course I know I put myself at risk, but I talked to the doctors and they said if I'm careful, I can do what I please. So, yeah I'm doing it.

the very essence of a survivor
I don't know if I'm a survivour, I think I'm just too stubborn or too cowardish to die just yet. Besides, before I go I still have to bug the hell out of a lot of ppl >:D

[scottishlass.livejournal.com]

Thank you, Dian.

As I said in my post, I think it was definitely grief talking out of her and she looked for someone to blame. I guess I was just very convenient.
Additioally, the timing is just too bloody perfect with something else. A couple of weeks ago I closed one of my sites and her asking to friend me coincides with that time, perhaps she wanted to get back to me for closing that site. I don't know and frankly I don't care. If I had to choose I would rather not receive such mails, but then again they make me take time and reflect, I rant about it once and that clears the air for me. And making more ppl aware that there is breast cancer out there and that you all should go to check ups, heck, that is a plus.

[little-witch27.livejournal.com]

Una, du bist großartig! *biggest huggles in the world*

[alexandral.livejournal.com]

I am sorry and ** big hugs ** I think you are so brave and I would have been certainly laying in a dumpster after 11 years of what you are going through..

And YAY! You have another fabulous Takyua header!!

[scottishlass.livejournal.com]

You would fight as well, Alexandra. And it isn't as if the cancer is always in the forefront of my mind. Between chemos Ihad about 2 years where I needed to take medicine but I was 'healthy' and didn't think of the illness every day. Otherwise I would have given up long ago. And there are good times and bad times.

[elfnut.livejournal.com]

I cannot believe someone actually implied/said you wree faking it ...

But then, you can't ban stupidity from the world .

Lotsa love
Elf

[barefootatkheb.livejournal.com]

sorry you had to deal with that, she really shouldn't take out her grief on you *hugs*

[rika-66.livejournal.com]

(((Una))), when you named the reason behind this post of yours I felt surprised, shocked - and after, quite sad.

I don't really understand the reason why that person decided to say those stupid and cruel things to you. Because of the loss in her (?) own family? But come on, this is an absurdish reason!

Cancer, sadly to say, is not something rare in our world, this could happen to anyone, in any place. So many of us, in our life sooner or later have to reckon it in our close circle of people (relatives, friends, ets). Personally, 8 years ago, I've lost my man to it. I still feel quite sad about it and sorry for him. And what? Is it a reason to hurt others? Stupid, stupid woman.. Grr.. I'm very angry. :(

Una, I respect you highly. Please, don't listen what livid fools say. You are a brave person and you do everything right. Even if your situation is not easy and create a lot of problems and troubles in everyday life, nevertheless you live your life as YOU want to. That's great.

[traumjaegerin.livejournal.com]

Puh... after reading this, I'm so totally shocked that I don't really know what to say. I know that it must be grief that made her talk this way, but nonetheless I can't understand how she can say something like this...

I don't know you that long but after reading some of your posts I know you're a really strong and kind person who deserves to be healthy and happy. I'm so impressed sometimes, but it's hard to put in words without stepping into "Fettnäpfchen" as I often do...

[nedrazeall.livejournal.com]

It is amazing that with all the connections we have these days people still don't know how to connect to each other properly. People deal with their problems and illness however they deal with it. This person has a lot of nerve telling you that you're faking it. I think you did the right thing but tossing them from your flist. I say bravo to deleting the garbage, warning anyone else to tread lightly and continuing on life as you live it. Life is short and can be cut shorter. Fuck anyone who doesn't get that. Love and hugs for you.

[miriel361.livejournal.com]

My mum (adoptive) died of breast cancer. She bet it for six years and then it came back. At the same time she developed lung cancer. Thank goodness she died before the lung cancer caused her to fight for every breath. It was a small compensation.

I think you are very brave Una. And despite my mums death, I still believe in miracles.

And yes I have already had my first mammogram.

[queenbubbles.livejournal.com]

That's awful that someone said that to you. Why would you fake something like that? It's a horrible disease! Hugs to you, Una!

[padawansguide.livejournal.com]

I think your attitude is great. Seriously. *hugs*

[scottishlass.livejournal.com]

Yeah I was like, WTF? But instead of rushing in with all guns barrelled I thought about why she would react this way and calmed down quite a bit. But still.

How are you, love? I hope everything has calmed down at your end of the woods with Mara and Camilla. *hugs*

[scottishlass.livejournal.com]

thank you :)

[scottishlass.livejournal.com]

I'm sorry to hear about your loss, Rika. *hugs*
When you loose someone it is always like a tiny open wound on your heart that never heals and only scarrs when you are lucky.

Ühugs*

[scottishlass.livejournal.com]

To tell you the truth I was gobsmacked when I read her mail ... I was first really pissed off but then calmed down. Grief can make you do really stupid things and that mail was one of them.

Never mind the Fettnäpfchen, you are writing in a different language so it is not avoidable :) Just say what you want :)

[scottishlass.livejournal.com]

Thank you !!! *big hugs back*

[scottishlass.livejournal.com]

That is good to hear. You can never be too young to have your body checked. When I was first diagnosed I was like .. I'm only 28, I can't have cancer!! Unfortunately, breast cancer can affect any age and it is important to go to regular check ups.

I'm sorry to hear about your mom. Sometimes the disease is just too overwhelming :( I wish ppl could fight this illness successfully, but I guess that is wishful thinking.

[scottishlass.livejournal.com]

I know, I mean if I was about to fake something I'd rather fake about being a thin, beautiful long-legged blonde *smirk*
But seriously, I don't know who would do such a thing. Other than those who might suffer of the Munchhausen syndrome or something or want to emotionally blackmail someone.

[scottishlass.livejournal.com]

Thank you, Nedra. Yeah I thought it bet to delete the mail and also get rid of her on my flist. Otherwise it would have annoyed me - but as I do not flock most of my entries she can stillread, oh well ... I won't change my ways just because of one person.

[tinwetari.livejournal.com]

You are such a strong woman and I really admire you for that. Wishing you all the best.

Don't worry

[carviangli.livejournal.com]

Hmmm...how do I say this without saying this w/o sounding like I pity you?
Well I'll try. I can to some extent understand how hard it must be to have breast cancer. NO, i am not a patient. But in grade 2...(like a gazellion yrs ago) my best friends mum died of cancer. I remember her being devastated and she became really different. She stopped talking to people and became more distant. I guess thats as much as I know about breast cancer. But I agree, why shouldn't you live normally? What's the big fuss about? I think it was wrong for that person to say such things to you but I think they were just feeling hurt.
Atleast now more people are aware of breast cancer and other forms of cancer. I'm only 15 so I've never had a check-up but next year everyone in our school is getting a cervical cancer vaccination (it's an all girls school).
I hope you get better and don't get down on yourself. Hmm, I am not sure if you're into Bollywood but from the words of Aman in Kal Ho Nah Ho 'Live life to the fullest because who knows tomorrow may never be'
Have a great year :)

[scottishlass.livejournal.com]

Thank you :)

Re: Don't worry

[scottishlass.livejournal.com]

Thank you for your words of encouragement. And yes I am into Bollywood and I know the very scene you mentioned.

I hope all goes well with your check up, and don't be scared. The sooner you start these regular check-ups the better. Please tell your school mates as well.

[carviangli.livejournal.com]

Hmmm. I don't know whether I should say this. I hope people don't sympathize with me because of this because I don't need or want it. But yeh, I suffer from something to. It's not a serious disease,but I think but it's pretty bad. I guess heaps of young people suffer from it. I'd rather not talk about it because it's hard. And I really don't want people complaining that I'm a fake :(
Anyway have a great year

Also...on a less serious note can u please add me as a friend! Thank you

[scottishlass.livejournal.com]

Added you as a friend :)

[scottishlass.livejournal.com]

I don't think ppl will say you are a fake when you reveal whatever you have. I think it happened to me because I was an easy outlet for the grief of that person's recent loss.
Don't use mental scissors in your ming just because you think ppl will give you grief when you write something in your journal. It is your journal after all. Friends lock it if you think it would be better.