Support System

ImWorthIt

I think those of us who have been around for awhile, whether actively or not, would say we have found support here. Most, if not all, of us who were here before Greg earned his wings would agree that this was a very supportive and active site. I would say it was a very proactive site- always with tips, hints, encouragement. It brings me to my question.
Aside from WhatNext, where did you turn for support? Who did you find was a good support to you? Family? Long time friends? New friends? People who were going through treatment at the same time as you? People you met while going through treatment?
Who encouraged you? Who let you rest? Who pushed you?I think we all find what we need in different situations. I am hoping that if someone is sitting back thinking "This is NOT the supportive place I thought it would be" that they may consider our suggestions for support.

ImWorthIt

I will start. My family was "supportive" in an obligatory way. I found that my long time friends acted like I was contagious and most of my more recent friends were more supportive. I am glad I found this site when it was still active.

Gin

My church family was wonderful. They provided prayer, encouragement, meals and love. As a breast cancer patient, I also received reliable information and support through the American Cancer Society’s Reach For Recovery program.

PaulineJ

This is the place I had support and encouragement .Otherwise I was completel\y going through it like everything else by myself..My surgeon was encouraging and supportive.He also told me years after when I called him on something that I have PTSD for everything I've gone through trauma,because the so call primary. doctor I have now told me at the time I didn't have dementia when I told him what was going on.Because i'm too smart and remember too many things.lol!

2943

I was on a breast cancer site to begin but once I added cancer 2 kidney I came to seek this site more. 14 months later add cancer 3 and I really need WhatNext. I was at a terrific teaching hospital that had many support sources which I took advantage of. There was a weekly Art for Recovery that was fabulous. I did not share my illness with many so support there was from family who were terrific. My many disciplines of doctors, PAs, etc were on the spot with my care and treatment. I started this journey 6 years ago. I have been called a warrior to be where I am now. Hugs

MarcieB

The thing that really shocked me was learning how many people I knew who were survivors and I had no idea. Once the news of my diagnosis spread, women came out of the woodwork to tell me their experiences and all of them were positive and encouraging. It was extremely helpful! the small group I am part of at my church, organized meals and suppled rides if needed (I only needed a ride once, because my husband went through it all with me. - except for radiation.

I did that one all by myself, because that is what I wanted. My doctor gave me an early morning app, (and I never had to wait). I could get up, shower, prepare coffee and fruit bites to take along on my drive beside the river. It was spring and I saw the world open up in those 30 days. Ducks and swans nesting, first flowers popping up, pale green leaves beginning - I loved it. By the time I got to the hospital I was in a great mood and my technicians were lovely young people (we even showed each other our art work on our phones). I could be back in my house by 9:30 am. The radiation would make me a little sleepy during the day, but it didn't not burn my skin. I count that experience as a win. I can't say enough about support during this illness, but sometimes I think it also helps to *draw in* and get a hold on who you are.

Carool

Thank you, ImWorthIt, for the question.im sorry that most of your long time friends weren’t supportive.

My small family, including my partner, were very supportive, as were my friends. And my boss at the time, and most of my coworkers in the smallish place I worked in. I was very lucky in that.

I blabbed to the world about my cancer diagnosis. In doing so, I learned that a neighbor in my building, someone I’d known for decades, not only had been diagnosed with breast cancer but had been misdiagnosed by the same radiologist (who, btw, had misdiagnosed someone in my hospital’s b.c. support group)! What are the chances, in a city with so many radiologists?

I found WN (on FB) much later. I miss the WN we knew. But I guess it’s us now.

judithj

Right on MarcieB - We do discover a lot about ourselves, don't we. Found What Next when going through Breast Cancer. Additionally helpful with double hit Lymphoma - stage 4. In remission from those but just diagnosed last week with Squamous cell cancer inside lymph nodes in neck.
So...back again to myself, my wonderful family and - all you great What Next family out there.
Greg rooting us on I'm sure. We should have a motto, and maybe t-shirts!

judithj

I forgot to add, thanks for starting the question I'mWorthit!

Bug

My husband was very supportive. I have two sisters who were treated for DCIS. One was helpful and very open about everything. The other tried but I quickly realized she was really still too traumatized by her own experience and I stopped reaching out to her because I didn't want to upset her. There were also some friends. I was really glad to find WN.

MLT

Yes, thank you for asking. I have always had family support, but my friends are the BEST! There are a couple I can call about anything, they have been to so many appts with me they understand the terminology and ask questions. I attended a couple local support groups, but they have fizzled out. What's Next has been great support and has been a place to ask questions, express feelings. Blessings to all.

ImWorthIt

I am so glad to see so many responses to this question. Marcie, I too was surprised to find out how many people had been through it as well. Recently, I found out about two more friends from high school who had been battling. One of them around the same time i was going through things. I wish I had known.
Carool, I to blabbed all the time when I first got diagnosed. Then after my mastectomy everyone wanted me to shut up and keep it private. Then COVID came along and no-one wanted to know anything about anyone other than who had COVID and who didn't.
I am still very adamant about having preventative mammograms so early detection is possible. I know I am "preaching to the choir" with this group, but I tell people all the time, MAKE TIME for that mammogram. If I hadn't had so many normal ones and then thought "I have other things to do" I might have caught it even sooner. I felt nothing. Tiny calcifications in my breast- like the size of coarse ground pepper. Who know how long it might have been there or how long it would have taken until I "felt" it.
I saw my mammogram tech (the one who did my mammo when I first was diagnosed) the other day for the first time since my diagnosis. She was telling me that she had a woman recently who was saying "Oh but my breasts are small. I would feel it right away if something was wrong." She said she wished I had been around to tell her "DON'T WAIT." I told her I would always be happy to write something or tell patients how important it is to stay on top of this.

ImWorthIt

Pauline. I am glad your doctors were supportive. I am sure it was nice to hear someone say you are too smart and remember too many things. It's true, you know! My doctors and their nurses and the breast care people are just the sweetest most of the time. I am so glad to have them in my life. I am glad to have you all in my life too.
It's strange to see who disappears in your life and who comes forward when you really do need that help.
Don't get down. Know there is always someone out there that you can lean on.

ImWorthIt

Carool, that is crazy that you found someone else who had been misdiagnosed by the same radiologist and that there were more people in your chain of connections with the same experience. As you said, that's pretty wild in a city with so many radiologists. We have three in our town. I have seen all three of them in my journey. I think sometimes it is good to have a limited supply, and other times it is really good to have "choices." I know I could have gone elsewhere if I hadn't been satisfied, but I felt very confident in my diagnosis and my treatment.

debbien507

I am a blabber too! I found this site first. Then Scott Hamilton's. Then inspire.com. I found I've had to help most of my family through my journey.

Carool

ImWorthIt, I know! And who knows how many other women were misdiagnosed by her. And that radiologist was very sanguine when she was told by us (individually, of course, after each of us was diagnosed) that what she’d dismissed as being “nothing” was, in fact, cancer.

I googled her a few years ago and saw she’d died.

Carool

debbien507, Blabbers United!

MarcieB

Debbie, I had to laugh when I read your sentence, "I found I've had to help most of my family through my journey."

Isn't that the truth? (!)

I couldn't count the number of times I had to say, "It's all right, I'm fine." to people who would look at me like I was about to leave the earth any day. And when I started wearing the little scarf caps people would avoid mentioning it, or try to not look at my head...until I began to have fun with the soft hats. I started looking for boho patterns and and I would tell people I loved the excuse to wear paisley again...things like that. I found that people were much more relaxed around me when I was positive. Of course, we all know there are days when we just had to hole up - that is when I really appreciated my devoted husband. (and the friends who left pumpkin spice lattes on my doormat).
;-)

Carool

MarcieB, that’s very funny!

ImWorthIt

@MarcieB, you are so right. I think a lot of us have to help our families through the journey. It's funny how people will avoid mentioning things or try not to look. I think it's because we are so programmed from the time we are young "Don't stare." People aren't even staring. LOL I had a friend who was very sarcastic, but very funny. She just went with the flow, and didn't bother with hats or scarves. One day this woman was looking at her with this super pitiful look and my friend asked if she was okay. The woman literally started to get tears in her eyes saying "Oh your poor thing. I mean, you've lost all of your hair." My friend feigned surprise and felt her head, and made a comment to the effect of "Oh my goodness. Where did it go?" She then smiled and said she sort of thought it made her look like a bada**. The woman smiled and turned around.

I still can't really talk about it much in front of my family. They are all "It's in the past. We don't need to talk about it." They truly don't know how much it is never "in the past." I just avoid the subject now.

But if I here someone saying "I just don't have time to get a mammogram," I am all over it about how much more time it will take if they find something wrong. I know a lot of people avoid it because they fear finding something wrong. I know that feeling. Sometimes I wish I could live in blissful ignorance, but it's just not feasible any more.

PaulineJ

sked by ImWorthIton Thursday, February 10, 2022


Support System

I think those of us who have been around for awhile, whether actively or not, would say we have found support here. Most, if not all, of us who were here before Greg earned his wings would agree that this was a very supportive and active site. I would say it was a very proactive site- always with tips, hints, encouragement. It brings me to my question.
Aside from WhatNext, where did you turn for support? Who did you find was a good support to you? Family? Long time friends? New friends? People who were going through treatment at the same time as you? People you met while going through treatment?
Who encouraged you? Who let you rest? Who pushed you?I think we all find what we need in different situations. I am hoping that if someone is sitting back thinking "This is NOT the supportive place I thought it would be" that they may consider our suggestions for support.

For me it was not any other place or person.You wouldn't understand unless you walked in my shoes for 77 years.

MarcieB

Bug - speaking of your husband, would you mind giving us an update? And please tell us how you are doing through it all? Being the care-giver is very exhausting, I hope you are finding some time for yourself. And speaking of support systems...I hope you have some available!

ImWorthIt

Bug, we are all thinking about you. We would love a report, but certainly understand if you are overwhelmed. If overwhelmed, just know we are thinking about you and hope you have a good support system.

Bug

Thank you, MarcieB and ImWorthIt. I really appreciate your kind words.

My husband isn't doing well. He feels terrible. He sleeps all the time and barely eats. He has been in bed for the past three days - except for when he goes to the bathroom. He is struggling more cognitively as well. He had an MRI last week and we had a video appointment with the onc yesterday. There is an area of concern. The onc said he feels it is either inflammation caused by the radiation or tumor growth. He said the only way to know for sure is to do surgery and take a sample of the tissue but husband is not healthy enough for surgery. He is supposed to start a steroid with the idea being that if it is inflammation then the steroid should help with that and give him more energy and stimulate his appetite. I'm working on either hospice or home health care. I don't want to drone on too long but those are the main points from the conversation.

I have some help from friends and a sister. I'm really looking forward to getting either hospice or home health care to help us.

I'm down and really scared. I just want to do the right thing and take care of him as best I can. My heart is broken and it feels like it just keeps breaking more and more all the time. He's my best friend, the one I've always talked to about stuff but I can't talk to him about this. Thank you so much for listening and your support.

debbien507

Marcie, Loved your missing hair story! I had quite a few wigs. I cycled through them every few days at work. Different lengths, different colors. Not once did anyone make a comment! I know they were looking!

Bug, Hoping you get the help you need.

Carool

Bug, I’m so very sorry.

ImWorthIt

Oh Bug, I am so sorry to see this news. It is definitely a tough road to be on. It is just the worst seeing your main friend, your sounding board, and the one who usually helps you process things is the one that you are worried about. I hope you can get the help you need to relieve some of the worry for you both. I never like to say "burden" because we all do what we can to help support the ones we love. Sometimes it does all seem like a lot and it can be overwhelming, but a burden? Not really.

I know most hospice group providers have counselors and pastors who may be able to help with processing some of this. I don't know what services are offered by home health care. Some caregivers are remarkably adept and helping care for the "patient" and for the family. My grandmother had a group of home health ladies that were a great support for my family as well. My grandmother loved the youngest one so much that she gave her a couple of pieces of jewelry (nothing particularly valuable or too sentimental) My mom got sort of upset about it, and I told my mother that this young lady took such good care of her and formed such a bond with my grandmother that I had no problem with her having the items. She was my grandmother's right hand. One of the other caregivers was this young lady's mother. She really helped me process a lot of the processes my grandmother was going through as her body slowed down. I still keep in touch with them from time to time. They were so amazing and compassionate. I do hope that maybe the steroid dose will help if it's just inflammation.

Much love to you and your husband. I will be praying for help, answers and peace for you both.
As you know, we are all here to help you process this and get it out in the air. Sometimes just releasing your worry into the world seems to make a lot more room for peace to be with you.

Bug

ImWorthIt, thank you so much for your kind words. I really appreciate it.

I participate in a couple of Zoom support groups when I can (the hospice organization being one of them) and am talking to a counselor to help me navigate things. The facilitators of the groups are sooo good - really helpful.

I'm so glad you found such a good group of caregivers for your grandmother. What a blessing. I'm thinking the right fit will be a huge help to both husband and me.

Thank you again, ImWorthIt. I really appreciate your support.