The Hermit Club
Comments
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Lily- I like the idea of being kind to yourself beginning tomorrow. I have had a mantra for a long time even before cancer when things felt difficult, overwhelming, etc. that "I am doing the best I can every day". Write it on a sticky note, put in on the mirror, chant it if you mediate. It is a positive message that reinforces you are doing the best you can with whatever you have at the moment. It is a way to be present with the current circumstances and to also be kind to yourself. Your best might look different than someone's else's best too so don't allow others to make you feel less than. People are not always kind about this stuff.
I understand the loneliness that goes with cancer too. We have all sort of felt that line that divides us into the people who have/had cancer and those that did not. I feel more relaxed with those that have had some sort of experience with the disease.
I did not tell a lot of people about it at the time, but talk about it even less now with some of the people I did tell. I am tired of being dismissed, listening to everyone else's cancer stories, or being told I am done with cancer. I cannot make them understand that the aromatase inhibitors make my body ache. Today my feet hurt so badly, which is an SE of the meds. I am not the same person I was before this, but I am getting better.
I know you are having some other health stuff since the bc. I am too and been working through that with my providers. The bc treatments can cause other issues for us. That is another thing many will never understand either. So much to explain, that is why other cancer survivors are just easier to be around.
I think you are taking very good care of yourself.
Wishing you better days sister
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Hey there:
I can relate to the loneliness of cancer too. The first time I was dx with BC, I was shocked at the attitudes of friends and family about my journey. They did not get it at all and I felt pissed off about that. It spiralled me into depression because I expected them to get it and give me the support I needed. I felt very alone.
This time, I understand more and do not expect to get support that I want and need from friends and family who have not had cancer. This relieves my depression/sadness a bit. I am not alone and I accept what they can give me.
I figure Its like having a baby. If you have never had a baby, you do NOT know what its like. You may give opinions and suggestions, but you do not know until you go through it. I remember before I gave birth, and before I was a mother how I would look at women who were pregnant or with babies or talk with them and give them suggestions or whatever thinking I knew what they dealt with. But I did not. It took having a baby myself and becoming a mother before I fully integrated it and understand the life changing event having a baby is. Its monumental.
It is the same with cancer I have decided. People who have not had cancer, even if they are being supportive and kind to you, DO NOT GET IT! They say inappropriate things (usually trying to be well-meaning) or they disappear and do not come around, or they treat you like you are back to normal after treatments, or they get irritated at your anxiety over new symptoms, or they look at you with pity and like you are the walking dead. Even doctors do not know what it is like to have cancer themselves, and I feel their alienation from me too. The only true solace and the feeling of been seen and heard and understood is from other women who have had BC and been thru similar treatments and have the similar worries. They GET IT! They understand BC has treatment that keeps on giving with SE and fatigue and depression and the ever present fears of recurrance and all the hypochondriac type behavior that goes along with that.
So don't beat yourself up. You are you and you are doing the best you can with what you have been dealt. I believe this to be true to the core.
wallan
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Lily55- I know just how you feel and when I came to "decrepitude" in your post I almost laughed aloud (but it's early AM here andDH is asleep). Just say that word a few times over in your head. It sounds pretty funny. I'm likely to refer to myself as decrepit, as the rapid thrust into menopause is wearing down my bones (literally and figuratively). But! I did go to yoga class yesterday for the first time since the MX.
Jazzy- I happened to see those photos of the NM yoga retreat. Beeeautiful!!
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Good morning friends!
Wallan- what you shared is so on point. Sometimes people have to have the experience themselves to get it. And well, there are those that just lack empathy. I avoid those people anymore. There are people who are just gone from the picture now, either my choice or theirs. And others I just limit my health conversations with. I have one or two friends who really get it. Some people can't and won't do the cancer thing. As the poet Maya Angelou once said "when people show you who they are, believe it."
Given you have a re-occurrence, I hope you are doing okay sister.
Falconer- thanks for the comments on the yoga retreat. I have now been on two of them this winter, and have my next one scheduled for this summer! I want to become certified to teach yoga to breast cancer survivors in the next few years.
Saw this today on FB and it seemed appropriate to our conversations here this weekend. Lily, let us be your witness?
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Hi Jazzygirl:
I love your quote. I think it is so true. When you feel seen and heard, you can somehow cope better. That is why I come to these boards. It is so so helpful.
I am doing better. Surgery is right around the corner now and I have had time to adjust a bit. Once I get the pathology from the mastectomy and treatment is really mapped out, I will feel even better.
A few people in my family have actually said to me, I seem so positive and upbeat about it all, which surprises me because I have been a wreck. I guess it is what I show to the world and I am unaware. I am glad they think that though because then they act more positive and upbeat around me and that helps lift me up out of my pit of anxiety.
Yoga is something I am going to try. I have only done it once or twice and am not that coordinated. LOL. But, I am going to go back to it now since it is so good for you.
wallan
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Wallan- I am glad you have your surgery date and agree about having the treatment plan figured out will help you know what to expect. When I went through treatment in 2012-2013, several people made those comments to me too. We can so easily go down the rabbit hole with any of this, we have to decide how to get through it and what we are going to talk about and with whom. My life was totally falling apart during that time, many other bad things had happened that year, and many knew that too. I just focused on getting through it. I learned some coping skills early in life with a lot of sick family.
What others perceive as being positive is sometimes just our way to cope with what we need to get through, without the need to explain everything to everybody. Sometimes people just expect you to be falling apart in front of them, and crying all the time. Trust me, we have those moments, right? That is where that "doing the best I can every day" thing comes in handy once again.
I think people being positive around you is a plus though. No one needs to hear the bad stories or worrisome questions some come with. I hope they will be better with you this time. Perhaps some of them have learned to be kinder this go around? One can only hope......
There are more and more yoga classes for bc patients with cancer centers. So when you are ready, look there if you have one near by. I have been doing yoga for almost 20 years and it has gotten me through a lot, including coming through treatment. Happy to talk more about that with you when you are ready.
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THank you everyone - Jazzy that quote is just so apt.......the trauma therapist I saw when I was i full blown PTSD told me his way of working with trauma was listening and talking it through......and he was a really good close empathic listener......even though we only had Skype sessions. Trauma cries out to be witnessed and in a way, shared, to be discharged otherwise its like a living nightmare.......
Thank you for being my witnesses - I went out on several walks today and feel a sense of achievement ...........it was a very windy day but I always notice I do feel better the more I move....despite the aches and pains in back and hips now!
I have only recently told people I have had cáncer, and even then it is not many and I only do so in settings where people will not ask any more........kind of indicating its a bit of a no go área........but even with the support here and my animals etc the loneliness is profound....or is tht just me? I know I am very sensitive........
BEdtime now.....thank you ll for being there and Jazzy you are a wise one all right.....
Wallan so glad you have a pathway through (you will never see me using the Word journey)
Falconer if we stand side by side we will be one whole woman!! SEriously thanks for your comments too........glad I made you smile.......night all
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Hugs Lily55: I am happy for you that you feel achievement today. Thats pretty awesome. Have a good sleep! I do understand the lonely feeling and the isolated feeling. Its normal under the circumstances I think. You are not alone on these boards. Hugs to you.
I went for a walk today too. During the day, I feel calmer and can do things. I distract myself. Today I did logic puzzles. It really got my mind off my troubles.
When this evening came, I started to feel the fear again. Maybe its because I am tired from the day and my defenses are down. Not sure. Even though I can see the surgery coming up fast and I am eager to get it over with and I am so glad I will finally have surgery, at the same time it scares me and I realize I really need to go thru it all again. And I don't want to. And then I wonder how effective treatment will be when after all that treatment I had last time I still got another breast cancer. And I wonder how long before it recurs again..... my mind goes haywire on me. sigh.... I tell myself just to breathe... breathe ... breathe... I need to vent about it, so I am writing it here. It always helps. I don't feel alone then.
It may be irrational, stinking thinking... going down the rabbit hole as they say, but its there. I really need positive input and I need to talk with a cancer pyschologist or social worker who will reassure me or something and help manage the anxiety. Only a few days left until action is happening. Thank Goodness!
My emotions and mind are a jumbled mess tonight. LOL.
wallan
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Lilly- so good to hear you had a good day. Getting outside always makes me feel better. Kuddos sister!
Wallen- I go down the rabbit hole every time I go in for my follow ups. All the what ifs. Just so overwhelming. When is your surgery date, friend?
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Hi Jazzygirl - March 8th Wednesday is mastectomy and start of reconstruction.
I never realized how nervous I would be.
Wallan
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Adarkadaptadi - totally get you, we are no longer part of the "normal" blase world........
Wallan good luck, the op is not that bad physically but emotionally I was a wreck.....others I know sailed through it. Its a massive body change, why wouldn't you be nervous. X
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Wallan- we will be here on the other side of surgery for you and in your pocket during. About a week before any procedure, I am very nervous.
I always bless my medical team now before surgery, helps me to feel like I am doing something that I can? Get lots of rest today and tomorrow if you can.
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Wallan- with you. Holding you in the light.
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most of the surgeons are pretty good now, they have had lots of practice, and know what to do. I fell asleep, and woke up with all done. feels a bit different for me, no reconstruction, the left side now feels like someone elses show sole. no pain after I woke up. no big zig zag scar either, they have gotten real good at that.
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Wallan will be thinking of you...xx
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Wallan, Best wishes and Good Luck!
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how are you doing Wallan? X
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Hey Ladies:
Home and sore and shaky. They released me on the 9th. But on the 10th I went back to hospital in morning because of shaking chills and the nurse who came by my home in the morning said my blood pressure was high and shaking was not normal. I didn't have a fever though. The surgeon saw me in the ER and said I had a strong reaction to the anaesthetic. I do remember shaking hard when I first awoke from the anaesthetic and a whole bunch of medical people around my bed. I was completely covered head to foot in warming blankets too. Several hours after the surgery the surgeon came by to check me out and said she was glad I looked better.
Anyways, they thoroughly checked me out in the ER for infection too. They sent me home after several hours. So now, I am just resting and am still shaky like having way way too much caffeine and kind of out of it. A little nauseous too, which again is from the anaesthetic. I can eat only a bit at a time. I am not in much pain though. Just sore, like my whole body is kind of bruised. They did the fat grafting and took it from both thighs. The mastectomy went well and the TE is in place. It is sore and uncomfortable, but tolerable. I only need tylenol.
The nurse comes by every day to check me out and clean my drains. I have two.
Anyone else go thru this?
Wallan
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Wallen- I am so sorry to hear about the anesthesia reaction. You went through a lot there. Although I had lumpectomies and no recon as a result, I did vomit in the recovery room after my breast surgery. BP does sometimes go way high after surgeries, a home health nurse explained to me that is often the result of the body's response to pain. Happened to me as well and it would not come down so they put me on licinopril. The nurse sounds like she is taking good care of you.
I am glad you are back home and recovering. Protein is important for healing, yogurt, cottage cheese are all good things to help you during this time. Feel better friend. Thankful you are on the other side of this surgery.
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Feel better Wallan!!!!
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Glad you are home Wallan and hope you feel better soon. Take good care of yourself
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wallan-sorry that this isn't going so well, kno, even tho we don't know each other,I think of you often. Take care, rest and heal....
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Hey ladies:
Just got back from another visit to the ER. The home nurse told me to go back this morning - my chills are not normal she said and I look ill. So, I went back and they did more blood work and now my liver enzymes are elevated and I need an ultrasound tomorrow. There was no one to do the ultrasound today. Sigh... The ER doctor was the same doctor I saw yesterday. I still do not have a fever. My drains are doing great. And, I am not in that much pain. My surgery wounds are healing nicely. LOL. The doctor did tell me they are worried about a blood infection but the cultures are not in from yesterday. (they did not tell me this yesterday!).He said first sign of blood infection can be shaking chills. Once the chills end, the fever spikes. So he said if I have any fever to return pronto. Otherwise, he said they really do not have an explanation for my chills except the anaesthetic reaction. The home nurse told me today that is not true. The anaesthetic would be out of my system by now. She said to push for answers. So who knows what the truth is? So, I am not sure what is going on with me. I do feel tired and nauseous from time to time and have diarrhea. That is from the antibiotics I have been on since day of surgery likely. They say I am not having a reaction to the antibiotics either. The doctor said time will tell. I will get worse or get better. That is the truth. But doctor said I have no emergency treatment needed as of yet.
I will let you know how the ultrasound goes. The liver enzymes are likely higher due to surgery, I bet.
Nice note - a on old friend of mine unexpectedly sent me flowers today. How wonderful is that? And my husband is really trying hard to be there for me. Sat with me in the hospital the whole time.
wallan.
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Wallan - listen to your gut - these shivers ARE the first sign of an infection so please do not take any chances, or wait until your fever gets high. If you continue to feel unwell go back. If they suspect blood infection then they should be giving you IV broad spectrum antibiotics........and listen to the Nurse. Infections are not always painful in the local or operated área so don´t be fooled by that. I speak as someone who once had a mega serious infection riding on the back of another infection and I was VERY ill before I finally agreed to go to hospital.
Good luck x
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Wallan, sorry to hear youhad such a strong reaction to the anesthesia. I did feel shaky for a good amount of time after- maybe a day- I can't remember as drugs were making me foggy. And yes I had the TE and the two drains. When you feel up to it, do the recommended arm exercises. Hope all goes smoothly for you now.
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Wallan- I am sorry things are not better yet. Sending you love and hugs and putting you on the prayer thread.
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Wallan,
Listen to the advice of others. The chills are not normal so stay on top of this. While you are not going through chemo so your immune system is not totally kaput you have been under a lot of stress. If things don't improve, back you go! If we learn one thing from this stupid disease it is to be your own advocate.
So glad hubby is coming through for you. I know it has been a bit of a process. Hugs.
Pat
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Thanks everyone for your well wishes and putting me on the prayer list. I feel so much support and love from everyone here.
Tonight, my chills have calmed down; just a bit of trembling. No fever. I am on top of it and will not let it go until they stop or are treated. It really shows me how important an advocate is for patients in the health system. Maybe a new career path for myself.... hmmmm....a way to pay back.
I will let all you wonderful people know how I am doing. You really are getting me thru all this.
wallan
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Wallen, The not knowing what has caused the chills to last so long must be frustrating. I do hope they continue to subside and that no infection develops so you can begin to heal and actually feel better.
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Wallen, here is a hug from me
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