The Hermit Club
Comments
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Jazzy that sky was certainly worth getting up early to see.
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Teka- I can almost visualize the little frogs soaking up the sun. Things coming out of hibernation here too, like rattlesnakes (yikes!)
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Jazzy, good Lord I would die............snakes........I run like hell from garder snake when I was at the shore house.......my 25 year old grandaughter wouldn't even go on the pool deck after the landscaper told us he found 2 snakes in the grass.....LOL
I will welcome summer, but just hoping the "blues" don't set in after selling my shore house.......but as I said "it was time"
Hope your doing ok Teka............you all have a great weekend....0 -
Sunrise through the neigbhors cottonwood tree, after two glorious days of rain
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Teka- yay for a nice warm day! We have been cold here this weekend with snow in the mountains and LOTS of rain in the valley.
I saw my first mexican primrose blooming in the garden today. All kinds of things will pop out this week after this rain I think!
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No need to feel guilty. I'm so happy to have found other introverts. I got a lot of pressure from doctor and NP who think I should rally a support group for myself. I think most people don't understand that being an introvert is not a negative. I personally don't want to have to deal with people offering their well meaning advice and condolences. Bless their hearts but I'm afraid I might snap at them - I am such a hopelessly private person and I don't want to put others in the awkward position of feeling like they have to "say something". Luckily, I'm retired so no need to tell anyone. I certainly don't have the energy to keep people up to date while I make decisions. I spend enjoyable time with my best friend but haven't told her about this. She thrives on anxiety - I don't. I may have to change my tune but so far I think I will be able to get through radiation with anonymous support.
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Sara- welcome to our thread! Sorry you find yourself here, but glad you found us! Many of us have had to hermit to get through this. I am less hermitty than I was during treatment, but still find I need a lot of alone time these days.
I think you have it figured out with respect to people and our dx. One of the hardest parts for me initially was figuring out who was going to be there for me and who was not. In the end, I had 2-3 trusted friends who were able to step up and help without the need to probe, advise, or judge me or the process. As time went on, those two friends remained the same with me, while others changed with me (and some of those people are gone now, of their own choice or mine) or just had their own change of focus and moved on. There are people I never told and never will.
It is too bad you cannot confide in your BFF, but understand that too if she has some things going on. I have a good friend who tried to help me through rads, but for similar reasons you shared, her own internal anxiety took over and became more work for me than help. Not everyone is good about putting other's needs first, despite wanting to. I don't really talk to her much about my health these days, but when the subject of my bc comes up around follow ups, etc., her comment to me is "I just know you are fine and it is never coming back again." She seems to know more than the oncologists I talk to! She had a good heart, but not someone I would probably tell again if it ever does come back.
All that being said, this thread is the best place to talk through the process, the questions, the fears, the SEs, etc. with other women. We all have different treatment plans, but in general, can support and help you through the rest of this. Do check out the rads threads, great place to talk to other women in that step of the process. I had internal rads, which is less common, but if you happen to be having that type, let me know and happy to share my experiences.
When do you start rads?
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Hi fellow Hermits!
First off Teka-that is so cute about the froggies! I would love to have a frog pond one day in our yard.
I have enjoyed reading this thread and want to read all 445 pages of it! It is nice to find others like myself. Reading your descriptions and feelings has helped me realize why I get social anxiety before every ladies night, play date, baby shower, etc and when the weekends came while I was working I would celebrate having a weekend with nothing like that on the schedule. Unlike my husband who thrives around people and seeks gaming nights and all, I prefer alone time and feel stress before getting together with people.
I couldn't work during chemo (which recently ended) because my workplace has too many infections, and I have loved every minute of being at home by myself when others say they would go crazy. I dread going back to work after my surgery (BMX May 5th) because everyone at work knew why I had to leave and I will have to face everyone as the new me (bald, to be minus-breasted) who I am still trying to get to know. I already had to deal with the "pink rah rah" crap before I left work as a co-worker gave me a pink ribbon to wear and the going away party had pink balloons and everything. I know they are well intentioned but I just want to barf when thinking of the commercialization of breast cancer and do not look forward to the "so are you healed" questions.
So thanks for being here!
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Georgia- oh the pink stuff, you poor woman! I read a great editorial in my local paper last weekend about a woman who is coming through bc treatment saying "breast cancer is not about pink ribbons, Koman walks, etc." People just don't get it.
You can always tell people you are doing okay, and just looking forward to getting back to work. And thank them for their concern and support too. I try to answer questions briefly without detail and then move on, prepared a "script of sorts" in my head when people asked how I was doing. Most people will clue in you are not interested in sharing details.
Your next big step here is the BMX. I always suggest to newbees to make their bedroom as comfortable as possible as you will spend a lot of time there. You have already been through chemo and probably know this. I think some other sisters who had MX or BMX recommend sleeping in a recliner if you have one. If not, pillows on each side work. I had surgery on each side and did that.
You will get through this. Let us know how else we can help?
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HI there
Getting nervous about surgery, next month. Have finished 8 rounds of chemo all dose dense. But now wondering how bmx will go I have a recliner, worried about the drains. Any tips? I've followed some threads, but have high anxiety.
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Valstim52 the surgery for bmx is doable, I did not have a lot of pain and was even able to go on my treadmill. The drains are the worst part , they are uncomfortable and at night you can only sleep on one side. I even had a bath, which you are not supposed to, I just made sure the water level was below the drain. The good thing is that they are only in for a few weeks. Pamper yourself , get books, magazines , munchies and movies to keep you mind occupied , you'll do fine. I also lined up some craft projects beforehand , that I could just sit and do, I did the same during chemo. I had an apt on my iPad for meditation and that helped with anxiety , have you asked for anxiety meds. It is very overwhelming but itdoes get easier.
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Thanks so much Lookforward. Yes I have an arsenal of anti anxiety meds. I'm a crafter and reader, had not thought about lining up new ones.
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Jazzygirl-Thank you so much for your response and advice! You are so sweet and helpful!And thank you also LookForward! You all have helped me here more than any other resource!
We are planning on moving our recliner out of the basement and into our bedroom. I am so happy we have one. Like Valstim, I am nervous about the drains. I heard they were such a drag. But I have had neck surgery before and was pregnant with twins last year, so I know how to rest and stay still very well and love TV and reading so passing the time is never a problem for me!
I am concerned about how to prepare emotionally for the BMX. For those who had surgery, how did you all cope with such a huge change in your body? How were your emotions? I already feel like a freak with no hair and less of a woman, less feminine now, and am worried about more depression after the BMX...
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Georgiared my goodness you have your hands full. I hope you have help, I'm sure you been cautioned by your medical team about what you can or can not carry after surgery. My BMX was before treatment because my bs told me that I had more then one tumor and she recommended removing the breast. I was more upset with myself for not realizing I had cancer than losing the breast.
I found out at the end of my treatment, when I requested my records , that my ultrasound had been misread and I had one tumor and should of had neoadjuvant TCH. That was upsetting. Take one day at a time and remind yourself that you are doing everything possible to beat cancer.
I know it is harder for you because you are young, have you thought of joining a support group. Remember you are still a beautiful wife and mom.
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Georgia- I am glad to help and just want to say after reading that you had twins last year, you must be a young woman and this is really a tough thing to deal with especially with a young family. However, there are more young women turning up with this crappy disease and who will be around these threads. There is much for you to deal with here friend.
I had a double lumpectomy due to another medical situation at the time that ruled out a BMX, but with respect to body image, all I can say is your body will heal. I do believe there are many good options for recon, and know many women on these threads have done this (or are doing it currently) after having gone through the more extensive surgery. By doing the surgery we must do, we are taking care of our health.
Has your medical team talked to you about recon? I think it is a personal choice for many women, some have the BMX and no recon and just wear a prothesis and others do nothing and then others have the recon that is always offered to them. My guess is you will have some time to decide what you want on this, right now, they are just ensuring that they get this stuff out of your body.
Lookingforward- just wow about your story. I ended up with some things removed around another surgery in 2012 I have always questioned myself.....
Sending hugs to all the newbees here going through treatment. We are here for more questions and like to help!
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LookingForward and Jazzygirl: Thank you both so much for the encouragement! And for sharing your stories!
Yes I am 42 and have a healthy 4 year old girl and 1 year old boy. Unfortunately our baby girl twin (Georgia💗) only lived for 1 day and 6 hours, because she had Trisomy 18. So it has been quite a year. We had secondary infertility, a very hard time getting pregnant the second time, so I miss Georgia greatly but focus on what I do have. Staying grateful is my motto of surviving loss and surviving cancer. I lost my Dad (2001), Mom (2005) and my 36 year old brother (2007) which taught me to cling to the ones left, as we never know when our number is up. I cried only at the time of diagnosis because it meant no more children (we were going to try for one more) and I had to stop nursing my son, who was 10 months then. Especially knowing it would be my last kid, I would have nursed forever! (Well as long as he wanted!)
My sweet kids are very well behaved and I have the most loving, caring and wonderful husband who has been my hero through everything. Jesus is my rock but my husband is our human rock! i also have very helpful and supportive in-laws and a great friend who is the day care for my children who helps us out so much and is another angel!
LookingForward-I am so sorry they read the scan wrong. That is so maddening! Because I had multiple tumors in the right breast and some cancerous lymph nodes, they wanted chemo first in case it had spread elsewhere. I was mad at myself as well for not catching the cancer sooner. I found it the day before Thanksgiving, and my primary care doctor didn't find it on my breastexam on November 3rd!
Jazzygirl: Thanks and yes I am getting TEs placed after the BMX and after I heal from radiation I will have recon, which won't be until January. As for a support group, I consider this group a great support! If I find myself depressed I will definitely consider it. I am a member of the hermit club, haha, so I don't always like being around people, but we shall see!
You all are angels and I am so thankful for you!
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Georgia- you have been through ALOT sister. I am sorry about loosing Georgia, but glad you are surrounded by many in your loving family. You made it through some hard stuff and you are going to get through this too. We will be here for you.
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Georgia you certainly have had a heart breaking year, good to see you have support from hubby and in-laws . Sending you hugs.
I having reconstruction hopefully later this year, can't wait.
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Thank you so much my angels! (Lookforward and Jazzygirl!)
That's great LF! I would love to hear how it goes. I look forward to perkier breasts my goodness that would be nice!
Right now we are at the beach for a few days compliments of the wonderful in-laws and a childhood friend, just hubby and I, in between the chemo which is done and the surgery which is coming up. Oh my what a treat. I am exhausted but I don't care! We walked and walked and walked. Before this I only walked down our street-twice! But this is a celebration of life, a going away party for my boobs (lol) and a celebration of our 5 year anniversary. Hope you all have a great weekend!
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Another hermit here. I already had PTSD and BC has just made it worse. Especially since I am a single mother of two younger kids, NO family around to help me, and few friends. I actually started sobbing in bed over this lack of support and how I will manage and function thru surgery and with any follow up treatments. It seems like every time I do ask for help the answer is No, or it just isn't there
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Jenn- I am sorry to hear of your struggles and can tell you are very overwhelmed.
This is what I know from my own experience, not everyone can or wants to step up when we need it. I don't have any family where I live either, but do have a strong network of friends. I found a few people who could just be present to help me through what I needed help with. If you don't have anyone saying yes, you need to keep looking for other resources that will help. Here are a few ideas:
There are some cancer support groups where women will come in and clean your house for you free of charge. This could be something to help you with things at home.
http://www.cleaningforareason.org/
Also, contact your local cancer societies to let them know of your situation. There are organizations like Koman, American Cancer Society, etc. may be able to advise you on groups that can give you rides for medical apts when you need them (one of the biggest challenges, etc.) There may be other groups for cancer support and often the volunteers are other cancer survivors, and they just get all this. They may have some support groups you can tap into as well. BCO is a wonderful resource, but sometimes the women here find local support groups can really help too.
Let us know how else we can help?
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Thanks for this. I think the other reason I was upset lately is last month I talked to the social worker at the main hospital that has a cancer center, and where I would probably go for any radiology or chemo. When I first met with her she ticked off ways she could find help for me.
But when I talked to her last week, almost everything she had mentioned was a no go. I am too far out of the hospital area for volunteers near the hospital to bring me meals (even though that hospital is only 10 miles away), my insurance company won't pay for any help unless I have a mastectomy, etc. Not sure if she would be able to arrange rides either.
I did register for Cleaning for a Reason. And I called the American Cancer Society and they gave me a couple local groups. But when I looked up one of them, it says they will only help if I need chemo, or am disabled because of cancer. I am keeping their number
Another one of them I did talk to and they may be able to find me help (using grant money), I just need my Drs office to register with them saying I do have cancer. Its just I've been burned before, so until I actually see the help coming, I'm not getting my hopes up.
This board is helping me, and is a great source of online support. Just last night I read another thread about how lonely an experience BC can be, And several people mentioned even if they had connections with family and friends before BC, a number of them dropped of the radar after BC. While I wish no one was in this position, it helped I'm not the one in this situation.
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Jenn- I am glad that you are finding this site to be helpful and finding some resources that may be out there for you now and in the future.
I think all our experiences are different with the support we have. It can be a lonely journey, but the goal here is for us to help you find ways for it to not be so lonely. It makes the whole experience far less daunting to just be with people who get the whole thing from all the worries after dx, what to prepare for during treatment, and more. People who can be most present with this are usually those who are cancer survivors or have helped someone through it. There is less to deal with because they understand both the treatment process in most cases, and all the emotions that go with a cancer diagnosis.
One of the things I found hard right after diagnosis with the people I did tell was having to deal with their questions and fears, or listening to someone else's cancer story, or their opinions about why you get cancer, how to treat it, and how to be sure it never comes back. I heard the whole gammut and had to learn to say to people "here is what I need from you, I need a ride, or for you to bring me a few groceries, etc." The ones that want to help will just do what you ask. You have to be very specific with people about what you want them to do.
Is there a thread for single mothers out here you can tap in to? Might be helpful for suggestions with managing child care, etc. when you need that help.
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At home this morning taking care of a few things before I had to my client site.
This flower is for all the newbees here. Things seem very hard and dark and difficult right now. But you will come through this and be like this flower, opening to the light.
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Love the picture jazzy! I know that things will get better, eventually. I'm on day 7 of 28 rads and NOW have abnormal bleeding for a few weeks, had 2 ultrasounds. And have 4.5 cm cyst on ovary. Gotta go on3rd for uterine biopsy and will find out results of ca-125 test. Just when I got to not crying anymore, I have this worry of another cancer. Hubby thinks I'm just trying to find something else to worry about, but he means well- he just doesntvunderstand 😄 Hugs to you all!!!
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Loving- I went through a similar crisis when first diagnosed. They thought I had ovarian cancer based on something that came up in a CT scan pre surgery. It was something else completely (and you would not believe the story). Your body is very stress right now and things may be out of balance, but they will be sure to check everything.
I am sorry things are so hard, sending big hugs your way.
Folks who don't have cancer don't understand how we feel, even if they are well meaning. Of course you are going to worry!
One foot in front of the other right now friend. The only way to get through this and taking it one day at a time. It is the only way through this.
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Thanks jazzy!!! I appreciate your advice!!! One foot in front of the other, one day at a time!
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Teka- I hope flowers enjoy moisture without getting too ruined. Late snow and freezes a problem out here too!
From my little patch of the world, multiple blooms on the claret cactus this year. First time blooming since planted in 2012!
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Morning all. Hope this day sees you all well!=Hugs!!!
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