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Topic: Feeling so alone

Forum: Mental Health: Because Cancer Doesn't Just Affect Your Breasts —

Meet and support others who are affected by these issues around anxiety, depression & other emotional effects.

Posted on: Oct 5, 2021 04:48PM

4sparky wrote:

I have been reading on this site for some time now but haven't really participated much, not really sure why other than maybe trying to protect myself a little as I don't have a lot of support and have been trying my best to get through all this on my own (telling myself I have to be strong not only for myself but for others in my life). I was diagnosed one year ago today and in the beginning I had a great peace about everything but as I get closer to the end of active treatment I am finding I am struggling more and more and my anxiety is getting the best of me more than I would like. I recently went through a scare with a new found lump (not cancerous) and I am still receiving targeted therapy for another month or so but I am dreading having my time at the clinic with my medical team come to an abrupt end. Having been at the clinic every week to three weeks for the past year has been my most consistent human contact over the past year/year and a half due to my diagnosis and covid. I have really restricted contact with others since they just don't seem to understand the importance of keeping as healthy as possible as I go through treatment. I don't want to get even a cold as I know the anxiety it brings when I am sitting in the waiting room and someone coughs, cancer brings about enough anxiety on it's own. I am feeling like without my constant appointments I am going to be left with little to no support and it's taking a lot out of me and I am starting to think I may be a bit depressed. I am hesitant to try depression meds due to side effects when I tried them in the past but don't like where my head is/has been going lately. I have regular sessions with my counselor and am very honest with how I am feeling which is good but she is not/has not been a cancer patient so she can't fully understand how I feel. I am grateful for everyone on this site that is so open with how they are doing and for those who share the reality that is life with cancer. Thanks for being here and for the support you have provided. I know I am not alone in my loneliness and and will continue to read those posts that help me find a space where I feel I fit in and am understood. Any suggestions on how to deal with the loneliness would be appreciated, it's hard to come up with things to keep myself entertained/focused when all I see is how much the people in my life have let me down over the course of this diagnosis.

Dx 10/5/2020, DCIS/IDC, Right, Stage IIA, Grade 3, ER-/PR-, HER2+ Surgery Lymph node removal: Sentinel Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 5, 2021 05:21PM Salamandra wrote:

Hiya,

It's a known thing that the end of active treatment can be a hard time. You go from having a consistent source of support/contact and feeling of doing something, to none.

Does your cancer center have a social worker? They might be able to connect you to support groups or other social opportunities. If not, you can speak to a social worker through other organizations, including Sharsheret, which is Jewish but serves everybody (I mention it because I had a good experience with them, there are others as well). Social workers are not only for sympathetic ears, they are also kick ass at finding resources and services.

I would say that I have found very different side effects with different depression meds, and just because one didn't work out doesn't mean it's not worth trying others. If you have access to a good psychiatrist, that is so precious.

I wonder whether some kind of group exercise program for breast cancer survivors might be something to look for? Ideally in person, COVID/circumstances permitting, but online opens up possibilities. That might be a good start for building back some routine with people who have an idea of what you have been and are going through.

Do you have any old friendships or family relationships that could be rekindled? That might be easier than building new ones.

Sometimes, when depressed, I set myself the goal of speaking at least once every x (day/three days/week) with someone who loves me, friend or family.

Sending good vibes!

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/2/2018 Whole-breast: Breast Hormonal Therapy 12/18/2019 Fareston (toremifene)
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Oct 5, 2021 05:58PM NotAsCalmAsILook wrote:

glad you’ve had the chance to read what this site is all about before you got to this point.

I feel you! In real life I’ve kept my dx to myself (and a really small circle). The support (and comfort) provided by all those appointments and staff. I never went more than a few days without someone who *knew* what was up without my having to explain it. Suddenly I was on my own except a quarterly check up!


I love the idea of a cancer related exercise group! And your counselor may offer you a valuable perspective - even without having walked in your shoes. BC feels like there is always another shoe ready to drop. Sometimes a reminder that not everything is cancer related can be good. Plus if your honest, like you say, she’ll still be able to understand your concerns.

Best of all - you have choices in front of you. Who do you invite back in? How do you interact with the world? What do you need? It’s like a spring cleaning!

And the folks here are pretty awesome. Find those you relate to and reach out. You don’t have to be alone if you don’t want to be.

Dx 7/2020, DCIS/IDC, Left, 6cm+, Stage IIIA, Grade 3, 4/12 nodes, ER+/PR-, HER2- Surgery Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic ovary removal Chemotherapy AC + T (Taxol)
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Oct 5, 2021 06:48PM ctmbsikia wrote:

I hope you can find the part of yourself that’s says-Yes! I did this and keep moving forward. It’s a life altering event and all the feelings you have are absolutely valid! Great advice here. If you don’t find something to replace going from active treatment to something else, don’t beat yourself up about it. It takes time. I lost my husband last year to cancer. The loneliness is hard so I do take an anti depressant everyday. I trust you will find what works for you, eventually. Just know we get it and it may take trying one activity over another. We are here too. Wonderful support. Wishing you well through this last month of treatment

Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/30/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/10/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
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Oct 5, 2021 08:11PM 4sparky wrote:

Thank you for your responses, they are greatly appreciated. My anxiety about treatment ending is not understood by anyone in my life, the one person who would understand was my Mom and she passed away almost four years ago from endometrial cancer (she also had breast cancer on two separate occasions, 20 years apart from one another). I was highly involved in her care, treatment, counseling, etc and know with certainty that she would get it. Those in my life now seem to think all is well and I should be excited that treatment is almost over, they just don't get it. Thank you for sharing that you understand where I am at NotAsCalm, it's helpful to know I am not alone in these feelings. I have thought about checking in with my cancer center's social worker but with all the restrictions with covid I don't feel she is as active as when my Mom was undergoing treatment, I could be completely wrong and should at least call and talk with her. I would love to get involved with an exercise group, support group (Salamandra, thanks for the ideas and good vibes!) but will need to work on my comfort level with being around people since that has been so restricted the past year and a half. I also would love to volunteer in my cancer center or hospice house in some fashion. Now that I have perspective as both a patient and a caregiver/loved one I feel I could help many and help myself in the process, my love of caring for others needs an outlet and maybe that is what I should look into for once treatment is complete.

ctmbsikia, I am sorry to hear of your husband's passing. Hugs to you.

Dx 10/5/2020, DCIS/IDC, Right, Stage IIA, Grade 3, ER-/PR-, HER2+ Surgery Lymph node removal: Sentinel Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 11, 2021 03:11PM MaineJen wrote:

4sparky:

I am approaching the end of a long treatment road (still have another surgery at the end of this month and then start hormone therapy but I did 2 surgeries, chemo - yuck - then radiation too) and I totally get what you're saying about getting used to appointments and seeing people and then it all suddenly stops/slows down. Then, we're left alone in our heads and hearts in the aftermath. It's very intense.

After so many, many weeks of daily radiation appointments (after chemo), I actually took a few days to believe that I didn't have a doc appointment or somewhere I had to be every day. I really, genuinely couldn't believe it. There is still more ahead, but it's not the same as the intensity/immensity of everything we've just been through over months and months etc.

Also: friends can be lovely (or sometimes not), but omg so many of my friends - very good people - want to celebrate and be DONE with this. Of course, I'd love to be done with cancer, lol, but there is just no being "done" with it the way they think. Even the most loving, supportive people are so over it, so ready to have me "move on" - I could go on and on about the things people have said along the way - all with "good intentions." Also: so many people have let so many of us down during this horrible nightmarish time in our lives. I get it. I've been stunned by some things people have said and done - and also, I've tried to be forgiving - with some, not all - because lots of people have absolutely no clue whatsoever about what to say or do when someone they know is diagnosed and treated for cancer and it just keeps going on and on. It's such a rough road we are on - on so many levels.

I don't know if you listen to podcasts or if you read, but one podcast series really has helped me navigate all of this difficult emotional stuff. The podcast is called "Everything Happens" by Kate Bowler and I just read her newly released book "No Cure for Being Human and other truths I need to hear" I wish I had underlined the pages where she talks about this very issue - how it feels when you are at the end of treatment. She was diagnosed with stage 4 colon cancer 4 years ago and she's still alive (!) and she's a professor at Duke School of Divinity. She was in her late 30's at diagnosis. She does have an Episcopal perspective, although I'm not religious or Episcopal and I have still found that her point of view resonates with me deeply. Here is a link to her podcasts in case you might consider listening (I found them so soothing, truly): https://katebowler.com/podcasts/

The first 2 I listened to - the best two in my opinion are called "Suleika Jaouad: The Kingdom of the Sick (part 1) and "Suleika Jaouad: You are Not The Bad Thing (Part 2)" and the 3rd one I loved was "Debunking Everything Happens for a Reason with Kelly Corrigan". If you're not a podcast person, you can go onto that link and click the podcasts you want to listen to right there on the website.

Anyway, this is all to say: omg you've been through something so horrid, so frightening, so lonely and isolating - all during covid - and it makes so much sense to me that you might be anxious and depressed as you face not seeing docs/medical people as much - as you face sitting at home with the reality and shock of what has happened to your body and life in the past year. In a chemo support group a few months ago, someone said something like "we cannot delegate this" - it just hit me so hard. We have no choice - we have to do this stuff all by ourselves, even if we have people around us who love us, we have to endure all of it - in our bodies and minds and hearts - alone - on some profoundly scary and sad level.

So please know: as alone as you feel - you're not alone. It's awful, what you've / we've been through and continue to endure. I do not have any idea what it will feel like to be done with my last surgery and to be on the hormone therapy path and to not be seeing docs constantly, but it feels strange to think about, and scary in some ways. I have a lot of support and I still feel scared and sad a lot of the time.

Thinking of you as you struggle with this very difficult stuff. I do feel hopeful we'll all make it to a place of less anxiety - but it is anxiety-provoking, isn't it.

Hugs to you wherever you are (socially distanced, safe ones, of course LOL)

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Oct 13, 2021 06:25PM - edited Oct 13, 2021 07:15PM by 4sparky

MaineJen,

Thank you for your response, I don't ever want anyone to feel the way I do but it is helpful to know I am not alone in how I am feeling as I approach the end of active treatment. It is not the happy time I have seen portrayed so many times, rather, it is nerve wracking and anxiety provoking on so many levels. I have been finding comfort in watching documentaries and movies about cancer patients, I think it's because I feel connection with them. Not sure if this is a good or not so good thing but it is helpful right now. I have read a few books through the last year too but have had more difficulty with reading due to side effects from treatment. I started listening to “Everything Happens" and am finding it very helpful/comforting as well. Thank you for recommending it, I look forward to learning more about myself through the conversations Kate has with her guests. Thank you for your encouragement and the virtual hugs, they are greatly appreciated. Hugs to you!

Dx 10/5/2020, DCIS/IDC, Right, Stage IIA, Grade 3, ER-/PR-, HER2+ Surgery Lymph node removal: Sentinel Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 13, 2021 07:31PM MaineJen wrote:

Hi, 4Sparky,

I'm glad you're trying out the podcast. It's really quality, beautiful stuff. I haven't loved every episode, but I've certainly listened to quite a lot of them and they've helped shape my thinking on all of this stuff.

I, too, have struggled to read throughout treatments - for a variety of reasons. One is focus. I've lost focus at times. One is exhaustion/fatigue, etc. Anyway, the end of active treatment is not the happy time portrayed in movies, and sometimes it is talked about in happy ways in real life. A dear friend of mine who lives in another State texted me saying she saw a giant, beautiful mural on a fence in her neighborhood painted with "Congratulations to ____ for finishing cancer treatment!" (I cannot recall the name she said was on the fence) and she asked me if I'd like someone to do something like that for me. Boy was I glad she asked before just hiring someone to do something like that! OMG. I wrote her back thanking her for the sentiment, but explained in no uncertain terms why I think that is jumping the gun, why I don't feel celebratory at all, and why that poor person who just finished active treatment might not be very happy to see a mural with her name on it plastered in her neighborhood - even if it was well meaning. OMG. So it's not just in the movies. I was appalled, to be honest.

This is a cultural thing, I think.

Anyway, it makes sense to me that you're watching movies and documentaries about people who have endured cancer treatments - of course you feel a connection with them - and if it is comforting, then by all means, do it. Cancer treatments are so brutal, so isolating, so painful on so many levels - anything that gives you comfort - why not give yourself that? It sounds ok to me. :)

Holding you in my heart.

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Oct 19, 2021 04:29PM 4sparky wrote:

Hi MaineJen,

Wow! I sure hope whoever painted the fence mural got the okay to do so before putting it up, I know I would not be happy about something like that. So glad your friend thought enough to see how you felt about it before doing anything to “celebrate” in that fashion. It amazes me how the general population seems to think that last treatment is something to be excited about, I know some feel that way but I don’t think it is a good generalization. I have decided to share my thoughts on how I feel about active treatment ending (anxiety provoking, pressure to be completely aware of any changes, not having frequent visits with care team) with anyone who will listen and every time I do I get the same response “I hadn’t thought of it that way.” Hopefully I can help bring awareness that it isn’t all fun and celebration for everyone when active treatment is over. For those who do want to celebrate, more power to them, I will celebrate with them!!! For me, I think it will be some time before I will feel anything but anxiety.

Hope you are doing well! Hugs to you

Dx 10/5/2020, DCIS/IDC, Right, Stage IIA, Grade 3, ER-/PR-, HER2+ Surgery Lymph node removal: Sentinel Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 19, 2021 05:54PM AliceBastable wrote:

I came across a quote somewhere the other day: Cancer isn't just a disease, it's a place. Once you've been there, you cannot leave.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Oct 19, 2021 06:25PM Spookiesmom wrote:

Yeah Alice. Think Hotel California.

First time IDGgrade 3, stage 3. Second time, found lump myself. That made me stage 4. Dx IDC, Stage IIIA, Grade 3
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Oct 19, 2021 08:10PM 4sparky wrote:

Thanks for sharing that quote Alice, it’s so true.

Dx 10/5/2020, DCIS/IDC, Right, Stage IIA, Grade 3, ER-/PR-, HER2+ Surgery Lymph node removal: Sentinel Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 20, 2021 07:47PM BtwnStars wrote:

4sparky, I can identify with the loneliness and strange feelings at end of treatment. A lot of it is probably also covid related and how heightened we have to be being immunocompromised.

This thread has some great suggestions already. I am starting with a support group thru a local organization soon. I know my cancer center had them too and right now they all meet on zoom, so maybe you can look into that?

I totally understand the thing too with everyone else thinking your “done”! I am trying to just let it go and forgive them for not understanding totally. And just deal with it on my own & of course here. Even ppl who have been so great and supportive thru this, they just can’t relate or get it. And that’s ok, I would rather they never know.

I have also found being on this site and helping others with my info or experience is a way to connect.

Just want you to know you are def not alone

Dx 3/25/2021: IDC, Left 1.5 cm, Stage IB/IIA, grade 2, ER+/PR+, HER2- Surgery 5/12/21 Lumpectomy, Oncoplastic reduction, sentinel lymph node removal 0/6 Chemotherapy 6/30/21 AC+T
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Oct 23, 2021 05:40PM 4sparky wrote:

BtwnStars,

I am with you in hoping those in my life never fully understand or get where I am coming from because then they too would be walking in our shoes of this thing called breast cancer. I had seen it from the daughter/caregiver perspective with my Mother so had a good amount of knowledge going into my own diagnosis but there are things you just don't understand until you are the patient. I am trying to find grace for myself and others as I do believe everyone is doing there best. I am very hard on myself so when I get really emotional/scared/anxious I expect I should handle things better than I have been for the past few months.

I have looked into support groups in my area but have yet to find any that are breast cancer specific but I won't give up looking. I also am excited to think I can become a mentor at my cancer center to help others as they go through this process.

Grateful to be feeling a bit stronger the last few days.

Thank you for your response and support.

Dx 10/5/2020, DCIS/IDC, Right, Stage IIA, Grade 3, ER-/PR-, HER2+ Surgery Lymph node removal: Sentinel Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant

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