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 Post subject: Re: Breast cancer support thread
PostPosted: Fri Apr 19, 2013 5:24 pm 
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Thanks, that helps. God, I hope they don't really wake her wait two months.

I apologize for the hit and run on this thread; I know that's so rude.

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 Post subject: Re: Breast cancer support thread
PostPosted: Sun Apr 21, 2013 2:11 am 
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Thanks everyone for the sympathy, it actually helps quite a bit. Fortunately the last few days have been calm so I feel significantly less stressed now despite what has been going on.

Sz, thanks for the info, I'll look into it when I have time. Right now I'm really busy with renovating, working from morning to evening (boy, does it feel good to do something with your own hands!), so this might take a couple of days.
I'm also debating if going to a support group might be helpful. Normally I am socially really awkward and shy and find it difficult to deal with strangers but still I'm wondering if in this specific case it might be worth it. There is a BRCA-network with support groups, maybe I'll try that out.

Lavawitch, please do not feel bad for the way you came to this thread. This is just the idea I had for it: a place to ask questions and share information and sympathy. I'm sure the inconclusive result will turn out to be harmless!


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 Post subject: Re: Breast cancer support thread
PostPosted: Sun Apr 21, 2013 3:36 am 
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Lily, my aunt has been in a support group for a couple years and says its helped her tremendously. They go out and do a lot of silly stuff together. (not the aunt who enables my Chanel addiction, but one who has visited here a few times) it might help you a lot. I'm glad you are feeling calmer.

I'm just so scared to read anything. Also, my mom won't ever go to the doctor, but she has smoked for 40 years and her siblings are all getting cancer and dying.

I don't remember what form she has. It's a rarer kind that doesn't respond to tamoxifen.

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 Post subject: Re: Breast cancer support thread
PostPosted: Sun Apr 21, 2013 11:49 am 
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Lily wrote:
I'm also debating if going to a support group might be helpful. Normally I am socially really awkward and shy and find it difficult to deal with strangers but still I'm wondering if in this specific case it might be worth it. There is a BRCA-network with support groups, maybe I'll try that out.

I 100% recommend finding a support group. I made some amazingly close life-long friends that way that just 'get it', with no fear of rejection/awkwardness because of my cancer. I was also super shy and kind of went thinking it'd be an awkward waste of time, but I'm so glad I did

my aunty (who is ~60) had breast cancer, and she had to try a lot of different groups to find one that was a positive impact on her. some were (basically) people sitting in a circle waiting to die, and that wasn't at all good.. so even if you try one (or some) that don't work out, *do* persist. it's worth it. I promise.

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 Post subject: Re: Breast cancer support thread
PostPosted: Sun Apr 21, 2013 9:48 pm 
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Lily wrote:
I'm also debating if going to a support group might be helpful. Normally I am socially really awkward and shy and find it difficult to deal with strangers but still I'm wondering if in this specific case it might be worth it. There is a BRCA-network with support groups, maybe I'll try that out.


So for me, when I was dx-ed I had a choice to get a mastectomy or lumpectomy and I was agonizing over it. My mom suggested that I go to a support group and ask, so I did. (I got the mastectomy.) Three years later the support group was disbanded, which sucked, but there are 4-6 or 7 of us who see each other regularly for lunch and they are the ones I share my fears with. Mr. Sz is super supportive, but things like, OMG I have a toothache it must be a brain tumor; my support group friends will understand that. Or how the routine tests have all the stresses attached. Like, each year subsequent, when we have clear mammograms; most people don't get the significance. The down side is that we have lost a few friends, and that sucks so hard; and when we get together we go visit another friend who is in hospice, which might sound depressing but really is very inspirational because she is so amazing.

Another thing we are going to do is go to a Health Care Decision Making class because we all feel like it is better to know our options particularly viewing our friend in hospice and things we would like to be done or have done differently. This is something I would not want to do alone, but since a few of us are going, we'll make a thing of it and it will be OK.

Like Joshua, I have made lifelong friends; women (because BC tends to be women) who are amazing survivors, inspirations, who have provided me with support that I would not have been able to get elsewhere.

It is also possible to make these connections online; I feel like Joshua and I have bonded over this, and I wouldn't hesitate to reach out to him and I hope he feels the same toward me. And now you, too, Lily.

A good in-person group will be lead by a professional who is usually available to members one-to-one if necessary, and this is hugely helpful as well. Like I mentioned, support group day was my day to have cancer, so it could be a dark day indeed, particularly when 9/11 fell on a Monday, or when I learned that Mr. Sz would be going overseas for a year (he's back now) or any other number of things. It's not for everyone though, and it does make you face mortality in a way, but for me, that has been a gift. Life is tenuous anyway; cancer or not, so we may as well party like it's 1999 or whatever.

Going to the group for the first few times definitely put me way out of my comfort zone, but the dx did that anyway, so I figured I had nothing to lose by going. But it totally depends on the group!

I'm here for you via PM or here in the thread, Lily, so just do whatever feels least uncomfortable! The groups will always be there, too. And having a BRCA+ group is awesome. Just weigh whether you feel more stressed going, or more stress dealing with it. I do have another friend who I brought to group once and she could not handle it, so I totally understand that part too.

I also went to an art therapy group for awhile and I treasure my little projects and how I felt when I was doing them. Then I started hiking seriously so I stopped having time for that, (and hiking provided its own therapeutic results) but now, with the broken leg, once I can drive again and before I can start hiking or biking again, I'll go back to art therapy and I know it will help :)

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Last edited by ~Sz on Sun Apr 21, 2013 9:53 pm, edited 1 time in total.

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 Post subject: Re: Breast cancer support thread
PostPosted: Sun Apr 21, 2013 9:50 pm 
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lavawitch wrote:

I don't remember what form she has. It's a rarer kind that doesn't respond to tamoxifen.


Probably triple negative. That's what makes it tough; there are no adjuvant therapies for that.

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 Post subject: Re: Breast cancer support thread
PostPosted: Wed Apr 24, 2013 10:44 pm 
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UGH. So, usually I'm fine with all of this but the past couple of days I have been completely unable to control my body temperature. Mostly it is hot flashes from the tamoxifen, but then I get terribly cold as well. I'm fine with being warm, but I can't help but feel like something is wrong with me. I do better with the warm weather because then I am dressed for it, but these days I just can't figure out how to be comfortable. I have a blanket and cat on me one minute and am shivering, the next minute it's full on heat flash. /whining.

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 Post subject: Re: Breast cancer support thread
PostPosted: Thu Apr 25, 2013 1:47 am 
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I feel you on the temperature issues! Most of the time I'm fine but now and then, especially in social situations, the heat flashes are incredibly annoying. And most nights I wake up all the time from either being bathed in sweat or being really cold (in spite of being all snuggled up in a warm blanket).

Gah, I'm sorry for coming here only ever so sporadically and not having really the time to respond properly to your posts, but thank you Sz and joshua so much for sharing your experiences and advice about support groups.

In terms of news, I totally had a hormone-induced meltdown yesterday. I hate being so PMS-y sometimes, which I never was before BC. Yeah, life is hard... (I know that these issues are not REAL problems, as in life-threatening, but they're annoying still)


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 Post subject: Re: Breast cancer support thread
PostPosted: Fri Apr 26, 2013 2:31 pm 
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Lily wrote:
Gah, I'm sorry for coming here only ever so sporadically and not having really the time to respond properly

No worries, Lily. Thinking about cancer can be such a head trip. Some days it's great to just not think about it, and of course, life continues to happen all around us, so there are always things that need to be done. I like that this thread exists but we don't need to feel obligated to post.

Quote:
In terms of news, I totally had a hormone-induced meltdown yesterday. I hate being so PMS-y sometimes, which I never was before BC. Yeah, life is hard... (I know that these issues are not REAL problems, as in life-threatening, but they're annoying still)


Oh man, the hormone crepe! I am totally over it. I think meltdowns can be productive, like, a release valve, though. I often feel better after even though they suck while they are happening.

I hope you have an awesome weekend!

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 Post subject: Re: Breast cancer support thread
PostPosted: Tue May 14, 2013 9:20 pm 
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So, of course the Angelina Jolie thing is all over the internet. http://www.nytimes.com/2013/05/14/opini ... .html?_r=0

I don't think it's wrong to categorize her as brave; finding out the results of the BRCA test is akin to a cancer diagnosis by proxy and any way you look at it a double mastectomy is major surgery with an uncomfortable recovery process. Sure she has tons of money and great surgeons; pretty sure she bleeds like the rest of us and has the same propensity toward infection and discomfort. I'm neither a fan of hers or not a fan, but the awareness of the BRCA mutation is a good thing and if it can bring the testing into a standard of care covered for all, then that is also a very good thing.

One thing that struck home with me is that she is going to use her own nipples in the reconstruction. I had a nipple sparing mastectomy (that's the part of my story I haven't gone into) which means the nipple was removed, the reconstruction was done, and the nipple was scraped for pathology and put back into place. All good. Except not; bad cells were found and I had to go back in and under to have it removed. So that was a pretty low blow. Then, in another separate surgery, I needed a skin graft because it wasn't healing. Now it's all fine. But it drove home the point for me about choosing mastectomy over lumpectomy; had I done the lumpectomy those bad cells would still be there.

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 Post subject: Re: Breast cancer support thread
PostPosted: Tue May 14, 2013 9:25 pm 
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I think it's great that she's sharing her story. And yeah, things are easier for her because she's rich, but you're so right, sz, that she bleeds like the rest of us etc...
I saw a weird facebook post today about how Angelina Jolie sucks and something about how she just did this to have an excuse to get plastic surgery and it's all because she's rich and preventative mastectomy is BS. It was so weird. It didn't occur to me that anyone would think that.

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 Post subject: Re: Breast cancer support thread
PostPosted: Tue May 14, 2013 9:48 pm 
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I loved Angelina Jolie's piece in the NYT - it was brave of her to come forward and share her struggle, and not spare the details while also not making it seem like its really hard.

I think some of the reactions are so unkind. Major surgery, even with the best surgeons is still incredibly draining. And she still has a 50% chance of dying from ovarian cancer, which is what killed her mother at 56. I saw someone post "what's the big deal, she had a double-mastectomy and then she got implants." And I wonder what kind of person can have no empathy for the struggle it must be to have watched your mother die, and know that the same is likely in store for you and then make a hard decision to undergo invasive surgeries (she describes one as being sci-fi like), and undergo a long recovery from them because you love your children and want to watch them grow up.

It also really makes me think about getting the DNA test done...

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 Post subject: Re: Breast cancer support thread
PostPosted: Tue May 14, 2013 10:06 pm 
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Do it, Tofulish! Or -- at the very least -- have a consult with a genetic counselor. They will ask you to trace your family tree and look hard at who is still alive, who has passed and why. I lost an aunt to BC and a cousin to either uterine or ovarian cancer and that was enough to have insurance cover 80% of the testing for me. And I wanted to do it because I have a lot of female cousins with daughters whose risk factors would have been raised if I had it.

I imagine that Angelina will have the preventative oophrectomy once she recovers from this. It is pretty standard protocol, though often the other way around. There's also the CA 125 test and her score may have been low enough to put it off for now.

And, like you mentioned IJDI -- for all the pink ribboning, the lack of real understanding by a lot of the public on this has been eye opening. I don't expect people to have the level of knowledge I and other survivors have, but everyone knows someone affected, so I did this more of this was common knowledge. We still have a ways to go, particularly for women under 40.

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 Post subject: Re: Breast cancer support thread
PostPosted: Tue May 14, 2013 10:58 pm 
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ijustdiedinside wrote:
I think it's great that she's sharing her story. And yeah, things are easier for her because she's rich

in the US, maybe that's the case. she's certainly not the first, and it's covered for free under various medical schemes across the world though

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 Post subject: Re: Breast cancer support thread
PostPosted: Wed May 15, 2013 11:22 pm 
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Apparently Angelina Jolie is getting flack from the "alternative/natural" community including the Natural News and Christina Northrup, saying that she should have just had a "clean" lifestyle and eaten a healthy diet and that would have been enough to protect her. I don't want to go offtopic too far from the main topic of the thread, but I just want to reiterate how sucktastic it is to criticize another person's choices about what is right for them, their bodies and their families.

http://www.naturalnews.com/040349_Angel ... rgery.html

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 Post subject: Re: Breast cancer support thread
PostPosted: Thu May 16, 2013 4:40 am 
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joshua wrote:
ijustdiedinside wrote:
I think it's great that she's sharing her story. And yeah, things are easier for her because she's rich

in the US, maybe that's the case. she's certainly not the first, and it's covered for free under various medical schemes across the world though


That's a good point. Insurance is screwy around here. Is the reconstructive surgery generally covered for free too?

ETA: I also meant that it's easier for her because she doesn't have to make the same decisions a lot of other people might have to make like can she afford to be out of work during all the surgeries/recovery, who will watch her kids etc... Maybe in other countries you'd get better disability benefits to help cover that. I dunno.

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 Post subject: Re: Breast cancer support thread
PostPosted: Thu May 16, 2013 10:30 am 
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ijustdiedinside wrote:
That's a good point. Insurance is screwy around here. Is the reconstructive surgery generally covered for free too?

in at least Australia, it is. I don't know about elsewhere but I assume so?

my Aunty had a double mastectomy because of ~*~lumps~*~. a couple of years later they gave her a boob job and a tummy tuck (where they got the tissue) - she decided she was okay with that :P

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 Post subject: Re: Breast cancer support thread
PostPosted: Thu May 16, 2013 1:37 pm 
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My aunt is still waiting for an appointment to check on her troubling bone scan results. She is going to be lucky to get in sooner than end of next month, but she is on waiting lists. This is driving an hour to the largest specialty center. She is considering trying to pay to go to a private clinic in Dublin or London because she is so stressed and scared.

Care in other countries is not all roses. If her cancer is back, what is the impact of losing a couple months treatment time?

She did get her reconstruction covered, but had to wait almost 2 years.

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 Post subject: Re: Breast cancer support thread
PostPosted: Thu May 16, 2013 3:48 pm 
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Tofulish wrote:
Apparently Angelina Jolie is getting flack from the "alternative/natural" community including the Natural News and Christina Northrup, saying that she should have just had a "clean" lifestyle and eaten a healthy diet and that would have been enough to protect her. I don't want to go offtopic too far from the main topic of the thread, but I just want to reiterate how sucktastic it is to criticize another person's choices about what is right for them, their bodies and their families.

http://www.naturalnews.com/040349_Angel ... rgery.html


To me, this is on topic. It is maddening how much ignorance I've read about people not having a clue about genetic dispositions. And I don't expect people to be versed in this, but I also am amazed at the amount of people who spout ignorance as fact.

The whole "why didn't she wait til she had cancer crowd" totally miss the point. UGH.

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 Post subject: Re: Breast cancer support thread
PostPosted: Thu May 16, 2013 3:52 pm 
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lavawitch wrote:

She did get her reconstruction covered, but had to wait almost 2 years.


There are lots of reasons to wait for reconstruction with regard to healing, particularly if radiation is involved.

The immediate reconstruction that is going on now was pretty new when I had my surgery. The idea that I would wake up with a breast in place was a huge thing to me. Mastectomy is a pretty word for amputation but the result is the same. It's nice to have the option to remain intact, in a way.

If your aunt had to wait just due to waiting lists, then that sucks. While reconstruction has gone a long way toward improvement, prostheses really have not. Many women struggle with the discomfort of them, and they can truly add insult to injury.

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 Post subject: Re: Breast cancer support thread
PostPosted: Thu May 16, 2013 3:57 pm 
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lavawitch wrote:
If her cancer is back, what is the impact of losing a couple months treatment time?


Gah, sorry for three posts in a row.

She should not wait 2 months for a good solid pathology; once she has that, that is what will dictate if she can safely wait. It all has to do with the specific sort of cancer she has at the site. Many breast cancers are pretty slow growing; others are aggressive.

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 Post subject: Re: Breast cancer support thread
PostPosted: Thu May 16, 2013 4:50 pm 
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angelina jolie's post made me take my imaging center's recommendation for yearly mammos (even though i'm only 34) more seriously. (i'm 6 months behind, because i didn't like my previous gyno, and have been procrastinating on finding a new one, and the imaging center can't mammo me until i get a new prescription. i just called yesterday and made an appointment.)

my mom had precancer in 2005, and then she was fine for a while, and then she got pancreatic cancer, and then shortly after kicking that, she got something else higher up behind her lungs. (those might have been there all along, but the hospital was saving money by only imaging her pancreatic area.) :-( she's the only person on that side of the family to have cancer, but my dad's mom's family is riddled with cancers. dad kicked skin cancer, grandma died from bone and lung cancer, her sister kicked breast cancer, and her sister's son died from something long ago in his 30s or 40s.

my mom is putting on a brave face, but i'm kinda terrified. :-( i'm not ready to lose her. she's in her mid 60s, but she's still young. :-( i am going to see how much of the genetic testing would be covered for me, considering all the cancer in my family. (also, since pancreatic cancer is also partially linked to the BRCA genes, but she has like 7 aunts who all lived to old age, so chances are, she doesn't have it.)

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 Post subject: Re: Breast cancer support thread
PostPosted: Sun Apr 17, 2016 6:25 am 
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I thought it was time for a little update from me and also to ask how everybody is doing. So, how are you doing? How are your loved ones who have cancer-related woes doing?

For me, a great lot of stuff has happened last year which made this year certainly the worst of my life yet.

Warning: I'm going to talk about kinda gross and traumatic stuff here, so this is not for the faint of heart!

It started with getting a prophylactic double mastectomy last year in January which I really wanted to do so I could stop worrying about growing another tumour. I had some drama with my health insurance because they did not want to cover a double mastectomy (only the healthy side is considered medically necessary) but it worked out in the end. So, they removed my breasts and inserted so-called expanders which are saltwater-filled implants that can be pumped up. This was necessary because on the side where I had the tumour the had to demove some skin and there is also a lot of scar tissue, so some stretching had to be done.

I did really well though and everything healed nicely, I had no trouble pysically or mentally whatsoever. So, all was still good.

Then, exactly one year ago (which is also the prompt for my update) I developed pretty sudden bellyache. I had had some problems with constipation for a while but had always chalked that up to the changes in my body due to the artificial menopause. After all, I was trying super hard to not be paranoid about tumour stuff.
So, after one night of no sleep because of pretty intense pain I went to the doctor (it was a Friday) who sent me to the hospital because only they would be able to get some lab tests done to find out what is going on.
In the hospital they did an ultrasound of my abdomen, some basic bloodwork, didn'd find anything significant and sent me home with some pretty powerful laxative. So I went home and drank that (it was 2l of liquid), hoping that once everything is flushed out I will certainly feel better and still sure that this was just some constipation. Well, by the evening I was throwing up like crazy because my digestive organs really tried to get rid of everything but the exit was still blocked, so to speak. So, bowels in uproar and fearing to throw up any second and feeling miserable overall I called the ambulance to bring me back to hospital. There they still didn't know what to do with me as the ultrasound didn't show anything. Luckily for me my belly hurt asymetrically when they examined me in the evening so they decided to keep me there over the weekend to rule out appendicitis.

After I told them that I could not go to the bathroom even after the laxative the tried all kinds of other laxatives over the weekend, none of which worked. Seeing me be more miserable every day they finally did a CT which showed some obstruction and after that they tried a coloscopy... and this is when they found out that the obstruction was a pretty impressivly sized tumour. They took a cell sample and made very grave faces because everbody was fearing that this was my breast cancer metastasizing.
Also then it became clear that surgery was necessary to first of all bypass the tumour so my by then super bloated belly could empty itself. There were two options: a stoma or a little stent inserted besides the tomour. Well, I certainly did not want a stoma so we opted for the stent.
On the day of surgery I was in such a bad condition though that they decided that the stoma was absolutely necessary to give me immediate relief. So, yeah, that ended up being major surgery no. 2 of the year.

It was kind of miraculous though how quickly I felt better after that though and went to show me just how miserable I had been with all of the liquid piling up in my belly and sqeezing my internal organs and with the metabolism unable to function properly. But, I had a stoma and a tumour so lots of stuff to deal with. Very fortunately for me the cells turned out to not be breast cancer cells but actual colon cancer cells. It is really bizzare to speak of luck in such a context but if it had been the other way round I think it would have basically meant a death sencentce for me.

Soo, the plan was for me to recover from that surgery enough to go for the next one - removal of the cancer and the stoma (if possible). Which they did after a couple of weeks but which was physically very, very hard for me. They removed basically half of my colon and sewed the ends together and after the surgery I was not allowed any food so everything could heal properly. So for a week I was fed with infusions and was very, very weak. The worst was the constant nausea and throwing up though because my stomach just did not understand what was going on at all. I don't think I have ever thrown up so much in my life, an the dry heaving with an empty stomach made it really bad.
At least, after a few days I got the SUPER AWESOME news that of the 38 lymph nodes they had removed during surgery not a single one showed any signs of cancer cells, so it had not spread! Not another chemo or radiaton for me. I cannot tell you just how relieved I was!

After the week was done and I was looking forward to some food so much (finally!), my temperature was up a little. Everybody wanted to make sure that there is no infection and that the healing is doing fine before they would allow me to eat something (which does make sense). So, I had to have a CT instead of food. I should explain that for the abdominal CT they want you to drink an incredibly foul-tasting contrast liquid. I had the hardest time to keep it down even when I was doing well and I just knew that it was absolutely impossible in this nauseaus and weak state. I was just so incredibly demoralized and drained and kind of hit a low point. I did try to drink the stuff but of course, trew it up after the first sip.

They did the CT anyways, didn't find anything and in the afternoon I was allowed some soup. After that things went uphill and I recovered pretty quickly but I still lost a lot of weight and had issues with nausea for a long time afterwards.

So, that was that. Eventually it turned out that this (again) was a genetically caused cancer which (again) is pretty rare in colon cancer. I won the cancer lottery a second time. Unfortunately they were not able to identify the specific genes (yet), so my brother cannot be tested to know for sure. This means that he also has to do the same prevention as I do from now on: coloscopy and gastroscopy once a year for the rest of our lives. Fun!

Then, in fall I had the last surgery of the year, this time to exchance the expanders in the breasts for silicone implants. This one again went very well and they are looking really good and natural which I'm really happy about. I went for a B-cup (an upgrade from my natural A-cup) and the size is just perfect now.

All in all this year was such a rollercoaster, in addition to the medical stuff a lot of other things are going on that don't belong in this thread and that are not easy to deal with. They are problems I caused myself though so no pity party for that.

For all of the cancer bullshiitake I do pity myself from time to time though, trying to come to terms with the fundamental unfairness of life in general. Also, this whole colon cancer was pretty traumatic in several regards and I'm really not sure how to keep my paranoia in check after being burned like that. A significant part of the trauma was caused because I did not properly speak up for myself in the hospital and take responsibility though so that one's on me and something I am working on.

I am thinking about a lot of stuff concerning myself currently, trying to work things out and at least that is something that was catalysed by the crepe that has been going on last year. I actually feel like I'm dealing okay with everything and like I'm actively trying to not let myself be pulled down into anxiety and hoplessness and negativity in general (which is also an issue for me in life in general). Yoga is helping, as are other mindfulness-related concepts.

At least I can be pretty sure that if I keep up with the prevention work I have a very small risk of a new tumour becoming an issue - even with crappy genes.

tl;dr: cancer sucks (as always), but there are ways to cope.

Sending out lots of love and sympathy to everyone dealing with cancer, be it themselves or loved ones who are fighting it. This is always a place to come to and share.
(Would a mod maybe change the thread title to a general 'Cancer Support Thread'? Thanks!)


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 Post subject: Re: Breast cancer support thread
PostPosted: Sun Apr 17, 2016 9:13 am 
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Semen Strong
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Oh wow Lily, that sounds like such a stressful and scary ordeal! I'm so glad that you're feeling better these days.

I am so sorry that you feel like part of your trauma was caused by not speaking up for yourself properly, and hope you find a way to make peace with yourself. If it helps, I've been good at speaking up for myself in hospitals, and it's been really traumatic to feel ignored by the doctors and nurses. I definitely feel like medical professionals in hospitals aren't really trained to take a lot of time to make us feel safe and listen to us.

Sending you many good thoughts, as you heal and thank you so much for sharing your journey with us.

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 Post subject: Re: Breast cancer support thread
PostPosted: Mon Apr 18, 2016 5:48 pm 
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Slept through a huge sale, OH NO!
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Very fortunately for me the cells turned out to not be breast cancer cells but actual colon cancer cells.


Ugh! What a shiitake show when this is good news. But I totally understand that it is.

Congratulations on your survival and on your reconstruction, Lily. Here’s to putting cancer in the rearview mirror.

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