Cancer Survivor , is it tempting fate?

jramick

The Colorless Nipple - and once again here comes that guilt again...at least we actually HAVE one to complain about!!!

Hopeful82014

Jramick - NO GUILT ALLOWED!!!!

katcar0001

Having a bad day. I am tired of "pretending" I am fine. Someone I barely know said at a party last night, "I am so proud of how you are handling this." Reeaaalllly? What she is saying is, I am so glad you are making it comfortable for US so we don't have to squirm when we are around you.

They just don't know, don't want to know and don't understand. And I can't say the truth or they back off me like I have the plague. This disease sucks. Thank God for you wonderful women on this board.

kittysister

I hope your day improves, katcar. (BIG hug for you!). I know just what you mean. If only they knew how we REALLY feel. This board is a Godsend, yes. It has made me feel less alone in all of this.

On another note, my nipple is colorless on the top half. The bottom half is a very dark brown. Not sure if that's ever going to change, because it's been 4 months now since my last treatment. I'm a very dark brown on the left side of my left breast. I'm a sight, all right. I took the radiation treatment off of my stuff at the bottom, because I was only able to complete half of the treatments. Not sure if I should add it back because I have written so much about rads.

katcar0001

Thanks for the hug! Hugs back to you. I am sorry about the discoloration. I am sure it will improve in time. If the nipple does not, maybe you can have the light part tattooed to match? It's so interesting how different skin reacts to rads. My friend had it, and her skin healed amazingly. In fact, her RO now prescribes what she did to all his patients. I believe that she did daily massages with lavender oil. She did not even burn where she had the boosts under her armpit.

tangandchris

yesterday was a bad day for me too....just emotionally tiring for me. Missing my breasts and feeling so very angry at how naïve I was about the reality of mastectomy and reconstruction. I don't know if I'll ever have reconstruction and I don't know if I should, it's a hard place to be in. I was really feeling the loss yesterday and the thing that a lot of people don't realize is that even after tx ends you feel it. In my case and probably for a lot of us, it is worse after tx.

anyway, today IS a new a day and I'm going to try to start fresh. ((hugs)) to all my sisters!

kittysister

That's great about your friend. Too bad they didn't have some way to predict who will have skin problems or other SE's. I don't think I would be brave enough to go for a tattoo on my nipple, though!! I'll just stay an "oddity". LOL

Hopeful82014

I'm cynical, perhaps, but I firmly believe that a large part of the reason they can't predict whose skin will react how to radiation is because they just don't care. The ROs keep downplaying the side effects and dismissing women's experiences. They like to pretend it's just 'a bit pink' or the like. They also downplay the long-term and/or permanent damage. I'm sure if any of them ever had to go through it themselves they would change their tune,

kittysister

Tang, I am sorry. We must have both been typing at the same time. I tend to forget sometimes that at least I have breasts, no matter how crazy one of them looks now. I know I would be feeling the same way you feel. I hope you have a better day today.

Hopeful, you're right. They don't want to know. I got the "well, I know you were getting the correct amount" when I hadn't even mentioned anything about it first. She got all defensive. I've wondered since then how she would do with treatments.

katcar0001

I wish all women could have my friend's experience with rads. My mind is still blown over how barbaric all the treatments are for this disease. We all have oddities now one way or the other, so you are not alone.

Tang, I am sorry you are feeling the loss of your breasts. It didn't hit me until recently. And it's odd having a uniboob. I didn't know anything about recon either--I just wanted to get through surgery as quickly as possible. I was starting to look forward to recon so I could feel a little more balanced, and now I may have to pay out of pocket. My insurance is international, so they are not under the same laws as a U.S. insurer (even though their office is in Indiana!). I would think since they paid for the mastectomy, they should have to cover recon. Isn't going through all this crap difficult enough? And no one seems to give a toss about the emotional trauma we have been through and continue to experience. (((Hugs))) all around.

JJOntario

Today is my birthday and if one more person writes "have a great day"...on FB ...it's just me being touchy because I'll be at the hospital for my 22nd rad treatment....and the boob is really breaking down...angry red, weepy in spots. My nipple is sore (which makes no sense because before rads it lost all sensitivity after sugery??) and is the size of a tea cup. My DH presented me with a pandora box which held a silver and pink ribbon charm. In my mind I just don't connect with that ribbon although DH's intentions were really sweet.

gypsyjo

Happy Birthday JJOntario, I always considered birthdays as a day to celebrate self, all we are, what we have been through, what we have lost, who we will become. We will never be the same but understand life from a different vantage point. We have a very similar Dx. I wish you an easier journey in the year ahead, and recognize what it took for you to get this far. Hugs from another "sister".

 

sherry67

JJONTARIO,

sorry to hear you are having a hard time with radiation. have you been using any products to help with the skin. I had used pure aloe with no alcohol after each tx and than Aquaphor at bedtime. My skin did not break down. I only was a little pink at my colar bone. Good luck with the rest of your tx.

kittysister

Best wishes on your birthday, JJ Ontario. I hope things look up soon and wish you only good things in the coming year. (((HUGS)))

NCDi

Hi Raider Girl: As a newly diagnosed 63 year old patient who has had the surgery and waiting for treatment decisions, I have wondered about the word "survivor". As I type this I see Gloria Gaynor belting out "I will survive" so that's a positive.

My mind is clear on one thing - I will stay positive, cherish each day and find joy in the most mundane of tasks simply because I am here to do them. Whatever I face in treatment and outcome I will consider myself to be a unique person and not yet another statistic. When we are categorized, we lose sense of self.

I am therefore getting on with life in my own special way - not surviving, but living, dancing to Gloria Gaynor.

Update: oh goody, the cat just coughed up a hairball.....what was that about joy in mundane tasks again?

tangandchris

katcar-My reconstruction failed, I started with TE's and ended up with an infection and they were removed. The ironic part is that the infection came on my prophy side I was told by the PS that reconstruction will be difficult now since I've had radiation and due to my weight they can't really do a flap procedure. I just wish I'd know what then what I know now about the possible difficulties involved. Now I'm left with scars and skin flaps and I just hate the way I look, truly I do.

i'm sorry your insurance is giving you a hard time about coverage for the reconstruction. It just seems like certain things should be basic when it comes to insurance and that is one of them. ((hugs))

Hopeful82014

JJ - I'm so sorry your birthday includes radiation treatment. I would be ticked (and sulky and sullen) in that situation. Might well have decided to give myself a day off, too. I hope that the rest of your day will be filled with loving surprises and that the rest of the year is markedly better.

katcar0001

JJ - Rads on your birthday is not a nice present. I am sorry your skin is breaking down. The nipple sounds ouchy. I hope you can find something to repair the skin. Maybe try the lavender oil? I believe that my friend mixed it with a carrier oil, so not full strength.

Tang - I am sorry but I cringed when I read your story about your failed recon. That is my biggest fear. My body rejected the vicryl stiches by making a little infected area around each one, and they had to be fished out, so my mastectomy scar is really ugly. I hate to look at myself in the mirror, and I am sure what I have is nowhere close to what you have to deal with. I have not done a lot of research on recon yet until I find out if I can get coverage, but I understand that the tissue expanders have some sort of metal back on them? I cannot see my body liking that at all. And I am not a flap candidate either--not enough flesh for that.

It's hard to feel like a "survivor" when the battle scars are a constant reminder.

Hopeful82014

Kat, sorry you're running into so many issues and road blocks. Hang in there.

katcar0001

Thanks, Hopeful. This too shall pass!

tjh

I have survived up to this point, and I will survive....definitely different but surviving. I feel good. However today's oncology appointment sucked. Onco score was 26, so chemo will start May 11. 4 rounds 12 weeks. Scared, nervous, and I don't know what else. JJ sorry this is your birthday, but by doing it you will have a lot more birthdays.

Hopeful82014

Geez, tjh, so sorry about your Oncotype. I don't imagine you were expecting that.

Rockym

tjh, my score a few years ago was 21. It was kinda a grey area, but I wasn't expecting it since my SNB was clear. It was only later they said there were micromets in 2 nodes, etc. Anyway, although 26 kinda sucks, it is also good because statistically it is cut and dry as to whether chemo will help you. I didn't take the tamoxifen in the end so in retrospect I am glad I did chemo. It was rough, but my hair is long again and life moves on.

SizzleStitch

I just found this group and have read through all your posts.

I have been in survival mode since diagnosis in late October. I had to wait until January for my double mastectomy/reconstruction. I was very upbeat and always moving forward through it and through my first 3 Chemos. Something happened recently when I realized my treatment is coming to an end....I guess it i...now what??

I feel fortunate to have had minimal SE so far. After chemo day, I have terrible brain baffleness for over a week. It makes it almost impossible to even post on the forums and be able to say what I actually want to say, let alone remember who said what...I also have had some really bad pain from the neulasta shots despite taking the Claritin. I feel guilty complaining at all....but...sometimes I just need to. Sometimes, I am just plain scared.

Katcar, you said it so well about how others really just want you to not make them squirm. I am having a lot of problem with my "friends" not even contacting me because they don't want to hear anything that isn't upbeat. As long as I put on that happy face and say everything is great, it is ok, but Lord help me, if I try to vent a little.

I don't know if I will ever feel like a survivor....maybe if I live to be 100.... Right now, I feel like I am walking on eggshells.....

katcar0001

Sizzle, I think it's very "normal" to feel scared. We have been through a lot--you even more so with chemo and shots. My bf had a nearly fatal heart attack a few years ago. He said for a long time afterwards, he didn't feel like he was in this world or in reality but felt like he was "floating" and disassociated from everyone. That is exactly how I feel, and I believe that is PTSD. But even he, as much as he tries to hear me out, is getting tired of it, and just wants to me "get over it already." How short his memory is. My best friend told me yesterday she does not even want to ask me how I am anymore. What am I supposed to do? LIE to everyone who loves me--yeah, I am just fine, everything is perfect? It makes me feel very resentful and angry. So, I guess my advise to you and myself and other women struggling with this--this board is the only "safe" place we have or maybe a breast cancer support group. No one else gets it, and it is too frustrating to go there and not receive the empathy and caring you need.

kittysister

I agree, Kat. I sometimes feel disconnected from the world. I think you may be on to something, it could be PSTD. Not being able to be honest with friends and family is the pits. I too feel that. So far, I've felt safe here for the most part .. except when I see really mean comments on a board or two here. Nobody needs more stress.

kittysister

Sizzle, I don't know if I will ever feel like a survivor either, and I haven't been through half of what you have been through. Still waiting on the other shoe to drop.

SizzleStitch

Thanks everyone.

I am trying so hard to be that superwoman I have always been....I am so tired of it.

Sadly, I am used to a crazy life. PTSD....good chance. Just in the last 6 years......

We found my mother-in-law at her home just after she had an aneurism burst and she died (my father-in-law was in rehab from having shoulder replacement. They were 90 at the time.).

My mom died a year later in England from a perforated colon during a colonoscopy. I didn't know she was having the procedure and hadn't talked to her on Skype in a week. I hadn't seen her in 12 years.

Just before mom died, I had a falling out with my best friend of 12 years and we haven't seen each other since.

About 4 years ago we found out my husband has prostate cancer but luckily we are on a wait and see with that. Of course, we are always worried that it will show growth.

Two years ago we had to help with my brother-in-law as he died from a brain tumor. We had been estranged for years but what could we do?

Oh, and as great as it is that he is still going strong and doing well, we help take care on my now 96 year old father-in-law.

And then, me....well...

I need to find a support group here (obviously) but the only one I can find meets on the 1st and 3rd Thursday from 7-8 p.m. Not a good time for me and most of the time the days fall when I am whacked out and unable to think, let alone drive at night. :-)

Now after that crazy rant and pity party... As absolutely crazy as it sounds, I felt so much better today, I had my husband take me for a long drive. I went to an outlet mall and got a new purse. We went to a lovely restaurant on the beach and took the long way home down the beach roads. I have been so cooped up, I do feel better... I hope it sticks for awhile.

I am so thankful to find you all and hope in some way, I can be as supportive of all of you

Rockym

For those of you feeling the disconnect, below is the thread/group I used to hang on when it occurred to me I was falling apart when I felt like everything should have been over. The doctors never seem to mention PTSD and some of my doctors even discounted the fact that I was falling into a deep depression. Next month will be 4 years for me (yay!) This too shall pass is real, but hard to feel when you are in the midst of it.

Topic: Why was I stronger DURING treatment than I am now?

SizzleStitch

Wow, I hope I didn't scare everyone off this forum with my last post..?? I am so sorry if I went on too long. I have to say it was very cathartic just getting it out. I also realized something else...I am a survivor...Look what I have survived so far...