The Hermit Club
Comments
-
Hey ladies:
Its 2 AM and I am exhausted yet am wide awake. My shivers have slowed down. I only tremble from time to time today. I am not even a week out from surgery. I am meditating and journaling to keep myself from freaking out and its working. I have no sign of infection, so maybe the shaking really was a lingering reaction to the anaesthetic like the surgeon said. My pain is not that bad. New ones come as the days go by. The inside of my new mastectomy scar, the one with the TE expander actually itches inside, but the outside part is numb. Weird experience. My drains are draining. So I am physically healing. I must say I feel absolutely, to the bone exhausted. I slept deep and long today. The exhaustion is still here, yet I have insomnia tonight. Maybe because I slept so long today. Who knows? I thought I would post and rant a bit. Generally, I am exhausted emotionally. But I have things to say. I am getting flowers delivered to me from co workers and friends. Actually delivered to me from a florist. How wonderful is that? My living room looks like a floral shop now.
This afternoon, I felt positive and thought I can beat this again. I can do this again. I am cancer free right now as far as I know. Yeah!! I felt cured. But tonight, at 2 AM, I am not so sure. Apprehensive. Where oh where will I find the strength and resilience to go thru this all over again? Sigh..... Well, the mastectomy is over. Now its the "adjuvant" treatment and the reconstruction. The reconstruction is a bigger beast than I realized. The surgeon says it may not take - the fat grafting on my other side. Again, I think is it worth it? Maybe I can get used to the "flat" look.
March 23 is the day I find out the pathology from the mastectomy. March 21 I have follow up with the PS. My new normal. Doctors appointments.
At least I have pretty flowers to smell and admire. How thoughtful people can be when you least expect it.
I had a friend call me today who told me she just found out a lady she swims with had breast cancer twice and she is now cancer free 10 years. I thought it was a positive, hopeful thing for her to call and tell me that. And I realized she is scared she will lose me. She was reassured herself about this other lady. The things you learn about what you mean to people after BC. This is a gift too.
And have you had your women friends confess to you that they are afraid of getting cancer themselves? It is making them reassess their lives too? Another gift.
wallan.
0 -
Wallen- just back from a business trip and checking in. How are you doing friend?
About friends and cancer, I shared with a few and several commented how I was the last person they thought would get cancer, some were clearly afraid of the whole subject and avoided me, others were not so kind after I got diagnosed. I think all women fear breast cancer, so many know people who have had it, some know those who have not survived. I have also had friends who have told me I am "done with it now" because I am through treatment and doing okay. All kinds of emotions and opinions around this disease.
All I really do for people who share their fears is to encourage people to keep up with their self exams and mammos. The earlier this is caught, the better all the way around.
0 -
Hey Jazzygirl:
I hope your business trip was successful. Did you get to have some fun too?
The home nurse came by today and removed a drain. I now have only one left in. It is draining quite a bit still. But at least one is gone.
I am doing better. Still tired, but more energy. My pain is minimal really. It gets a bit sore at night.
My home nurse herself is afraid of getting breast cancer she told me. Like you, I told her just keep getting your mammograms and checking yourself out.
It is true that some people avoid you. I have one coworker who avoids me. Other coworkers have called, texted, and offered to visit. But she has avoided me. Well, she did say she would drop by to visit the other day because she had a gift from the office, but she cancelled at the last minute and said she couldn't come by. She did though, and left the gift between my screen door and front door and never even told me she was here. I just found it when the nurse came by. LOL.
I hope everything is okay with you.
wallan
0 -
Wallan- a bit of fun while I was there, some lunch in the mountains with a colleague and also some big city shopping! I was driving so I had room to take stuff home, vs. when I am flying (pack-able things only with plane trips....)
The fact that the coworker who has been avoiding you left a gift at door speaks volumes. But if I hear you correctly, she is a coworker and not someone you consider a friend? Sounds like you have many others who are there for you from work. Hopefully you can just resume and be a coworker with her with nothing more than you return. I don't invest much anymore in the avoiders.....
I hope you continue to have many people reach out and support you and just encourage you to not worry about the ones who cannot deal with it. It is not your job to make them feel okay about things.
Glad you are doing better sister!
0 -
Wallan, stick with those who have kept in contact with you, pay no mind to those who avoid you.
0 -
Hey everyone:
Feeling really tired tonight. I have been out walking for about 15 minutes yesterday and today. And today I cooked up a big breakfast for myself and got dressed nice with makeup. To make myself feel good. But, now tonight I am wiped out. Too much I have been doing.
I see the PS tomorrow and the BS on Thursday. Starting to get nervous about the BS visit because I find out my pathology. All i know is it is node negative really. Its early stage for sure.
wallan
0 -
Wallen- it sounds like you are feeling better. Glad you were able to walk a bit and eat some good food too. Protein for healing!
Our bodies do let us know when we have done too much too. But you have to try and figure out what you can do each day. Just be patient and kind to yourself.
Node negative sounds very positive to me. I hope the rest of the pathology report brings good news. The earlier, the better. Hoping you won't have too much more to go through here friend.
We are here for you!
0 -
Wallan you will be fine, thinking of you and waiting to hear how you got on x
0 -
I've been away for a few years, trying to be "normal". Trouble is, nobody really understands how much everything cancer has changed my life. I am so unhappy, and I find myself STILL wishing (4 yrs after dx) that things would go back to how they were before cancer. I've tried to look at this positively, but nothing good has come from this experience. Things have just continued to roll downhill. I still don't really feel like doing much & would much rather stay home & hermit forever. How does everyone else do it everyday? I'm struggling to exist.
0 -
Hi Slick- sorry things are hard for you. Moving forward from all this crap is definitely not easy. And we all live with some level of SEs from everything, which makes things harder for the long term.
From what I a picking up here from you post, it sounds like you may have people in your life that expect you to be like you were before. And as a result, that is putting pressure on you to try to be something you no longer are- the person you were before this happened. We are forever changed physically and emotionally by this disease.
For me, being able to take care of myself and having as good a quality of life that is possible is what matters to me most now. I have let go of what other people think I should be doing or how I should be feeling. I have worked to keep things as simple as possible coming through cancer treatment. I definitely minimize my exposure to people who just don't get it. I have friends who tell me I am over this, or want to inundate me with every cancer story that comes there way. Or want me to put myself out in ways that are not good for me and never were. I have used the expression "sorry, not that girl anymore" more than a few times. It is my way of letting them know I am a different person now. You have to let go of letting people decide what your new normal is and how you need to be. It has nothing to do with them.
I encourage you to be honest with yourself about the people in your life and how they make you feel. If there are people who cause you undo stress, sit down and talk to them and let them know you are doing the best you can. I used to use the analogy "you know I had cancer, not the flu." Sometimes we just have to put it out there to others that the things they are saying to us are not helpful to our recovery. And you can also just create boundaries around things that are off limits if you know they just cannot hear you. There are some people I will not discuss my health with anymore because I am not willing to put myself in the position of being made to feel worse about any of it.
Have you considered finding a good counselor or local cancer support group to help you with some of this too?
0 -
0 -
Hi slickchickie17:
Hey there. Jazzygirl is right on the mark when she says you can not go back, only forward. You are a different person now. I can totally relate to how you are feeling though. Last time I had BC, I remember wanting to curl up with a big cozy blanket and stay there 5 years out from my diagnosis. I could not fathom why I needed to face the fears of recurrance every friggin day. Every lingering pain may be the cancer has returned. I could not move forward easily. And I had (still have) a husband who prefers denial as a way to cope and he thought I was back to normal. And so did my family more or less. They did not have cancer and they do not know what its like. Its like telling someone who has never had a baby or being a parent what having a baby is like. They need to go thru it to get it. Once I understood this, I realized I could lean on others who had BC and who understood, and then move forward. And as time went on, I adapted to the truth that I am a breast cancer survivor and I was able to enjoy my life and make plans for the future. I did not define myself as a cancer survivor - I went on. But it took many years and alot of talking and support and not forcing or beating myself up that I should be back to "normal' and getting on with it again.
Now that I have another BC 13 years later, it is even more of a reality that I will always be a breast cancer survivor and that I am permanently changed. We all are once we have cancer. You cannot go back to the way it was. This is a fact of life in everything actually. You need to let go of what was. You need to accept. And it will be okay. You are and will be fine. You are safe. Baby steps towards making plans and looking forward to them will help you. Once I realized I could plan a career still and I could get in shape and I could go on that trip in two years, I starting with baby steps. It pulled me forward. Do you have kids?
wallan
0 -
Slickchick...love your beautiful dog. A German Shepard was my first dog - so intelligent and bonding. I hope he can be a comfort dog for you in this difficult time.. From your post, I'm wondering- is there something specific that triggered the downhill roll?
From my experience life in general has lots of hills and it seems the higher the hill the more obvious the downhill. Being honest with yourself about how you feel is a start for communicating those feeling to those around you. Being gentle with yourself during this time is easier said than done, but I consider it to be one the greatest pieces of advice I give myself. Can I be as gentle with myself when I feel low as I would be with my friend? Can I be as gentle with myself as I am with my companion dog when he needs me?
Sometimes when nothing seems to be working for you then finding a professional person you could talk to is a useful option. I do hope you can find your way through this difficult time and stay connected to the women here who all too often share the lived trauma of a cancer diagnosis.
0 -
Wallen- that is some great advice. You make a good point about every ache and pain taking us to the fear of cancer and the re-occurrence risk we all live with. This is where people absolutely do not understand. The cancer can always return or new cancers can show up. We live with that reality.
Also, my sister and I had bc at the same time. You might be surprised to hear she does not get it either, when you think that she should at this point. She was diagnosed before me by a couple months, but had a more aggressive cancer and considerably more medical care than I did. I was finished with everything in six months (outside of the AIs) and she was getting care for a solid year. The upshot is she has people around her pressuring her to go back to being who she was before and have watched her for years now trying to jump through those hoops. She is stressed and exhausted all the time. Then she expects me to be the same. I have encouraged her to take care of herself, but also been firm with her about saying no to things that are clearly not in my best interest.
Remember that although we change, others around us don't. Even my sister did not. We have to create new boundaries for them to know what works for us or not. I just like to let people know these days I am taking extremely good care of myself.
0 -
Hey Jazzygirl:
Wow. You and your sister have been thru alot. You are so right too that not all who have cancer "get it". It is an individual experience. And we do need to set boundaries with people, no matter who they are. That is absolutely true. You bring to mind a friend of mine who was dx two days before me with BC for the first time. She had lumpectomy and axillary node dissection about a month before my mastectomy. She is node positive, stage 2b, hormone positive. She is starting chemo next week. She does not seem phased at all. I have spoken to her about it because she comes to me to know what chemo will be like. She says confidently she will be fine and she is not worried a bit about the cancer dx . She just wants to know how to plan her day around chemo. I am amazed by her actually and have told her that. She says she has other stresses in her life that bother her more. She says she will be fine and knows it. She carries on with work, volunteers, brought me home made chicken noodle soup and served it to me last week, and just is busy and active. I wish I had that kind of strength or positivity. I have never seen this attitude in any person newly dx with BC before. So, its inspirational and I hope it continues for her.
For me, I am not like that. I understand completely the desire to cocoon and not face the world. I worry about recurrance and this takes alot of energy for me. I wish it didn't. It took years for me to climb out of cocooning and stressing mode and to get on with plans last time. That is one reason why I took it so hard when it reared its ugly head again this time. I was knocked back a bit to the hermit mode. And the people around me who have not had cancer really do think things will get back to normal and I will be like I was before. They see I "survived" last time and I will again. They expect it now actually. They mean well. But they definitely do not get it. One thing I think now though, is they do not want to lose me either and want to believe for themselves that I will okay. It reassures themselves when they tell me I will fine. Our dx does affect those who care about us more than I realized before. And then I feel bad. Guilt. Aahhh..
I had a manager from work call me at home before my SNB surgery to let me know his mother had had BC and she was fine and that I will return to work very soon and carry on just like before. He said that BC is not a "serious" cancer anymore like it was 50 years ago. He meant well and I appreciated his concern and encouragement, but it was clear he did not understand. I wonder how his mother really feels? LOL. I do find women on this site and at BC cancer support groups to be the most supportive and helpful. When I felt so devastated the second time around, it comforted me to know that other women had felt the same way as me and that they coped and got thru it. I hope all BC survivors find this site and feel the love, support and encouragement that is on these boards. I hope your sister continues on well and cancer-free too. She is very lucky to have you Jazzygirl.
wallan
0 -
Wallan- it is very true not everyone reacts to a cancer dx the same way. My sister treated it as more of an inconvenience. Probably not unlike the friend you mentioned. The reality is, we go into the whole thing thinking we know and well, then we find out what it is really like during and after. Cancer does have it's way with us, treatment too......
A woman I worked with awhile back and whom is a fellow music friend in the community was diagnosed with a different kind of cancer about 2 and a half years ago. When I heard about her dx from her sister, I decided to reach out and offer some support. I would go visit with food, helped her with some light housework, took her to the store for errands. She did not know of my bc, as I kept it private but did feel I wanted to share it with her because I could help her better. She understood the importance of my need for privacy (self employed).
During our chats, the conversations were much the same as your friend. How to keep working, doing volunteer work, etc. During a conversation where she mentioned she was so exhausted all the time, I gently suggested she park the volunteer work for awhile, but she would look at me like I was crazy. It is important to her and maybe helped her to keep going, but thought it might help her to have more time to rest to park that for awhle. Chemo, FT job and then volunteering at music shows in the evening was really taking a toll. All I could do is go to work and then slept the rest of the time during treatment and for awhile after. But I could see my suggestions were not welcomed and I found myself just would ask her what she needed help with when I could go assist her, and left it at that. We found our place together as cancer survivor helping the friend who was going through treatment.
She is a few years down the pike now from treatment and we get together for breakfast about once a year and have a good visit. She is doing okay, but can tell the going forward part has been more difficult for her than expected. Other health problems have come up from the post treatment world, I think some from her chemo. She is now focused on getting to retirement in the next year or two.
It is unfortunate people are still expecting you to get through this second go around and be just fine. The boss' comments are classic, my mom had it so I am expert! I am sure if you talked to the mom, you would hear the reality. Yes, bc is more treatable, but we all know that women still loose their lives too. People will just go with what they believe. Lots of arm chair oncologists out there!
Slick- is any of this helping you to know you are not alone? Some ways to find your way through?
Another thought for you after something I read in the paper. My city offers a local cancer retreat to cancer patients and survivors, plus their support systems, once a year. I have never done it but have seen it promoted at my cancer centers and also the one for 2017 is coming up here and in the paper. They cover so many helpful things. I bet you could find some low cost resources at something like that. A safe place to talk about how to better find your way through as a survivor without judgement. You may want to see if something similar is offered in your area?
0 -
Well ladies:
Today is the day I find out my pathology results. I will finally be fully staged.
I will let you know.
wallan
0 -
Wallen- best of luck with your appointment today. Sending up love and energy for good outcomes!
0 -
Hey ladies;
I am frustrated I must say. I got my pathology report back but its not complete still.
I had 5 tumors, not two. Grade 2. Biggest IDC tumor is less than 1 cm. So I am stage 1A (according to BCO.org) node negative. Its a good thing I had a mastectomy. Its intermediate grade. No lymphovascular invasion. DCIS scattered through the breast. It is very similar growth pattern to the last time I had BC. Only a much earlier stage this time. (much smaller tumors) - so this is good news at least.
But I do not know the hormone status or Her2 status yet. I had my biopsy in January. And the surgeon said it will likely be another 3 or 4 weeks. 3 or 4 weeks!! I am stunned. I mean, I have been waiting forever and as you all know, the waiting is mental torture. I want to know if I need chemo or not. If I need hormone therapy or not. Or even radiation or not. I mean, I have been thru this before and know what i am facing and I really need to know. I think someone dropped the ball. I mean, I had a friend have surgery the next day after her biopsy and she had full pathology results in a week. She had her biopsy two days before me in January. She is now in chemo. We are going to the same cancer centre. She did have a different surgeon team.
So... I don't get it. When I asked the surgeon why so long she just shrugged. Before my surgery, I asked her how long before all this info would come back after the surgery and she said a week. It has been two weeks already since surgery. aaahh....
I need drugs or something
wallan
0 -
Wallan, it does sound fishy that you must wait so long for the pathology results. Also, I know how you are feeling about finding out that there was more than appeared in the imaging. Same for me. But my BS did tell me from the beginning that they couldn't get a good look at what was going on in right breast, and results were inconclusive even after two biopsies of that side. The left had another area of cancer as well, aside from the tumor they knew about. I am small, and don't have dense breasts. Bottom line is that imaging is not all that accurate, as you and Iare learning. Women can't make good decisions based on imaging and biopsies alone.
0 -
Wallen- I am sorry you did not get better information. Another 4 weeks is a long time to wait. Did anyone mention doing the Oncotype genetic test? It gives you a score to help early (Stage 1 or 2 without node involvement) if they would benefit from chemo. I had it for mine and did not need chemo. I had to wait close to three weeks for my pathology (I had my surgery about a week before Thanksgiving in 2012 and the holiday did not help). Another month seems really like a long time to wait. That would make it a total of 5-6 weeks from your surgery? BS does not sound helpful, mine was not easy either.
Can you talk to your PCP and share your concerns? The biopsy what diagnosed you, but the pathology from your surgery provides a lot more info (like the fact you had more tumors, DCIS, etc) for treatment needs. Sometimes the PCP can be our best advocate for us during times like this. I got mine involved around something during my cancer care. Doctors talking to doctors can usually help. Get a hold of your PCP with a message, etc. for him/her to call you.
Let us know how else we can help?
0 -
Hi Jazzygirl:
What does PCP mean? Principal care provider? Is this your family doctor?
wallan
0 -
Wallen- yes, PCP is your primary care doctor, also known as your family doctor.
0 -
Hi Jazzygirl:
I am going to call the cancer centre tomorrow and make sure the surgeon refers me there in a timely manner and will tell them the whole story. I will call around 11 AM in the morning or something to give the surgeons office a chance since my appointment with my surgeon was end of the day. She had told me in Feb that she referred me already and she had not done it. So it fell thru the cracks. I don't trust her office now. My surgeon is actually the sweetest woman you would ever want to talk with. Excellent bedside manner. But her time lines are off and have been since the beginning. I have told her waiting is anguish for me, and she would say she would make things happen fast, but things have not happened fast in my definition of fast. I came to terms with the waiting a bit, but the pathology report thing disappointed and frustrated me. She promised me the full report would be available a week after the mastectomy and even explained how they prep the samples and measure the hormone status etc. So now I wonder what is really going on.
My PCP is very good friends with this BS and that is why I was sent to her actually. He got me into see her very quickly. In about 10 days from when I had my imaging. I was okay with that. Last time I had BC, I had imaging and then was referred to a surgeon for an excisional biopsy, but I didn't get in to see the surgeon for about 10 weeks. After that biopsy, I received results in about 6 weeks and then I had a mastectomy two days later. It was three weeks later I got the full pathology report completed.
I am learning different doctors work differently and at different speeds.
wallan
0 -
Hi Bareclaws:
Thank you. You are so right. Last time I had BC, the tumor did not show up on any imaging. They thought I had a cyst. It was only when my areola was distorted a bit that I requested a biopsy. The surgeon told me based on imaging that there was nothing to biopsy but she would take out the cyst. It was a 7 CM tumor. Well, technically, the cancer centre said it was several multifocal tumors grown together (I think of it like buns in a small pan rising together).
This time when the BS told me two tiny tumors, I did not believe it really. (I was hoping it was true though). So I am not too upset about all the tumors because I was mentally prepared. I am relieved it was not a huge ugly tumor like last time and I am still stage 1. (at least as of today. LOL).
I am sorry to hear that you have cancer in both breasts and are dealing with this too.
This site is the best for allowing us to vent and get support and info.
wallan
0 -
@wallan, I am a little further down the road than you, but I remember this feeling -- maddening! And it didn't help in the slightest when well-meaning friends told me "if they're not rushed, that's means it's not an emergency... be grateful!" (Sorrynotsorry if that's been a comment already here.) It's torture to wait for test results, torture to hear "malignant" and wait for surgery, torture to wait for chemo to start.... I hate to say it, but once surgery is done and / or treatment (of whatever kind) starts, it is a kind of relief that FINALLY we are getting the alien out of our body. Unfortunately, the anxiety doesn't stop, it just changes -- managing side effects, ongoing dealing with medical staff, the world going on around us....
We are in an "alternate lifestyle" for awhile. Hopefully, for most of us, it's a year or so and done and we move to a recovery stage. This is my wish for all of us -- miracles upon miracles. It's not too much to ask, is it? XO
And I'm so grateful you all are here in this forum, thinking and feeling the same things I am, because I seriously thought I was losing my mind.
0 -
Hated the wait for test results and I still do!
0 -
Thanks guys. I am in a Zen place today. I actually went shopping. I am really tired now since its my first "long" outing since my surgery two weeks ago.
I have told myself it will be two weeks before I see any oncologist or get further tests. That way I can do other things and not dwell, if you know what I mean.
You guys are the best!!
wallan
0 -
YIKES!!!! OMG, Teka!!!
0 -
Teka:
Hope no stitches were needed... Ouch!
wallan
0
