Tips for fighting the dark clouds
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Chelle, How nice to hear from you. You house is beautiful. Snowstorm later this week? Oh my! I have had enough of that white stuff for a while. I hope it doesn't last too long. Maybe it will melt quickly. Your sure have lot of space for gardening. Maybe we can all travel to Colorado and have a big gardening party.
Lynne
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I would love to have a bco get together. A retreat. We can garden,cook,cry,laugh and just generally bond,in person. All are welcome at anytime!!!!
That would really fight the dark clouds!!!!
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Chelleg - what a lovely blank canvas to plan with! Are you busy looking at gardening magazines looking for ideas? I have tons... Then I. Cut out what I like and put it on a clipboard. After that I remove what doesn't grow in our zone9 ( which is a lot)! Then go to planning! I have an Achilles heel when it comes to hydrangas. If I can figure out how to share i will take a picture of my start this year.
I love the planning stage as much, if not more, than the planting! We are putting in a pool this year and have kept busy planning that and placement and style of lanai. I love to swim, so this will be great for me due to mets in spine and hips. Having a rough time with radiation things time. Lita was a life save with info on Zofran!
So glad to see the good news about your DH!
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Claudia, all ideas are welcomed!!! I am in zone 4. I lived in Oregon for a few years,where the hydrangea grow wild. Black berries ect. You simply drop a plant on the ground,and it will grow. Zone 4 is probably going to be a challenge!!! But I will have fun figuring it out!!! I love the magazine idea!!! I'm going out to buy some. And a big poster board to paste them on to. Thanks for the great tips!!!!
(((Big hugs))) Chelle. Pronounced Shelley,short for Michelle!! Some people get so confused by the spelling. My great grandpa painted CHELLE on a chair he made for me at birth. And it just stuck.
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Chelle - here is picture of my refuge! Plants will go in ground this week! When pool is done in back, sod goes in front and back... Can't wait!
This is where I get my sanity back. I sit on the porch and listen to birds, wind in trees and horses snorting while they eat! Have fun with planning! Also, Home Depot and Lower have books on hardscape(decks, patios, etc) Fun, fun, fun!!!
Claudia
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Sorry Chelle, picture won't go through. How did you do yours?
Claudia
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Chelle - how is your project going? Did you find some good ideas? Can't wait to see pictures!
We got the flowers in front planted and the pool is being plastered next Thursday! Yay! It was 95 here yesterday! Ugh...hate summer in Florida. Our store had been put on hold because we ate under a water shortage alert, also extreme fire danger! Hopefully that will be over soon!
Let me know how you are doing.
C
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Hi everyone, jumping in here again after about a year off the board, thought I could do this on my own, but no... :-)
Any suggestions about how to deal with well-meaning family? Reduced my sister to tears this morning by telling her to stop f*ing asking me how I'm doing. I was in complete NED after chemo, then progression was picked up about a year ago. Am on 4th round of hormone treatments trying to find something that will stop or slow things (CA153 count doubling every 3 months at the moment), and seeing onc every month, but it is a waiting game, between protocol and the fight my oncologist has with my medical scheme to approve changes in treatment, nothing happens overnight. And I am so sick & tired of my family & friends asking me how the appointment went & how am I feeling & what next. It doesn't change, we try the hormone treatment for 2 months, test blood, change if we need to. I've told them my onc has been very clear it is not life-threatening at the moment, we cannot make any rushed decisions, we have to try everything & make sure it works...
I'm at the point I want to lie to my family & tell them its working well & counts are dropping just to get them to leave me alone.
And I'm feeling like such a bitch about it but they are driving me insane....!! Tell me this is normal :-)
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Karz72- I have a lot of friends, people in book group, neighbors and others that I never told about my cancer. Those people never say " How ARE you?" I love taking a walk with them or something and not talking about cancer or my health. I know that if I tell someone I am having a scan, they are going to want to know the results- if the results aren't so great, I won't want to talk about it, maybe. Friends and family are as scared or worse than we are sometimes. To the people who know I just say I am fine- because, right now I am. I have a dark cloud over my head, but, as my MO says-everybody does- yours is just bigger. I think less information is kinder for a lot of people. They are so much less informed and scared-they so badly want you to be fine.
Take care of yourself
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I’m right in this, right now. After 6 years of being NED, I’m seeing progression. Admittedly small progression, but no less scary. My biggest motivator is being here to see my kids grow up. They were both adopted at 5 and 6. Now their father and I are divorced. I just want to see them both thrive. I want more time
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Iwiilwinthis, I am sorry you are seeing progression. Don't feel bad if it's a "little" progression. Progression is scary no matter how big or small. Its great that you have had six years of NED! Congratulations! I'm sure that your mind is all over the place, but once you get a plan in place you should start to feel better.
As for seeing your kids grow up, you will. I would hold on to that positive thought. Go do something fun with them to take your mind of this until you get a plan! Revel in each moment with them!
Hugs and prayers
Claudia
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Thanks Claudia! I’m working hard on keeping it in perspective
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I will win- I am sorry to hear about your progression, but glad it is very small. I am a single mother of a 11 year old girl and struggle with not letting the fear take me over some days also. Being a mom can add a whole additional dimension to this. I hope you kick that cancer right back to NED soon!
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Hi all! I'm so glad you're keeping the thread going. For the last 18 months, I've been working on a gigantic project - $25M construction project and it pretty much consumed my life. Working on average 60 hours a week, mostly out of an apartment in Auckland, away from home. Long story short, all the work we did resulted in approval of the first of its kind in New Zealand processing plant that will employ about 30 people in a lower economic area. Quite gratifying in the end, despite the numerous challenges.
On a personal note, I'm still stable. My five years since diagnosis is coming up in January. I'm still doing cat rescue, and am also working with a group of New Zealand MBC women to get MBC drugs (such as Ibrance) funded. Right now, the cost is $6000 a month and not covered by the health system or most insurances. We have over 7000 signatures on our petition and are hoping to meet with the Minister of Health in January.
The dark clouds still loom from time to time, and I revisit this page - the tips everyone has posted are great, so thank you!! Overall, I just stay busy and plan for the worst and hope for the best. Doing things that help make a difference for other beings has been something that's really helped me. If we're successful in getting these meds funded, I will be over the moon. And doing cat rescue, while at times sad and frustrating, is positive overall because you're saving lives.
Love to all of you, and huge hugs!! I'll try to participate now that my life is back to something a bit more normal!
Terre
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Terre, Terre, Terre, It is wonderful to hear from you. I am overjoyed to hear that your absence was due to the fact that you wereout in the world living your life. WOOHOO. You certainly have been busy. You are still an amazing woman with such a kind heart. You are contributing so much to the world. We have missed you, but we have not forgotten you. We will all celebrate your five-year milestone next month. Welcome back.
Hugs and prayers, Lynne
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Terre, you would not believe how much you've been on my mind lately! So nice to hear from you! Wow you've been one busy lady and I'm so happy to hear you remain stable. How have you been feeling? Those are some long hours you've been working but I'm glad you found this project so gratifying. I hope we'll be hearing more from you, I have missed you.
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Hi, Terre! Wonderful to hear from you and know you're doing well!
On the funding for Ibrance... Are you aware that in the US Pfizer has a generous co-pay assistance program for anyone with private insurance? Not sure how your system works in NZ, but wondering if you've attempted to involve Pfizer in the negotiations?
Big hugs to you and your kitties! Deanna
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Terre so nice to hear from you I've been thinking of you and wondering how you are doing and I'm so happy to hear you are keeping busy and doing well. Five years is huge congrats to you wow this made my day. All the best for you for the New Year.
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Terre, I never post on this thread and saw your name pop up and I had to quick say hi! SO glad you are doing well and now I will have to follow! LOL You know I need kitty photo therapy so I'll be looking for pictures! Good to see you.
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just want to say how helpful i found this post...thank you all
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bump
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I'mrather new to Stage IV. I thought I had a sports injury but an ER X-ray showed highly suggestive of metastatic disease. And so the saga began...
First off, I have an incredibly supportive husband but don't always want to lean on him all day, everyday. I've already changed his life in so many ways. In the beginning (3 months ago) I was accepting but had some very low spots - vacillating between “it is what it is - let's just enjoy life - let's just dance and forget" to “I want my old life back, what's next, what kind of quality of life is this". In 3 months, I've started Zometa for bone Mets, Fulvestrant and Ibrance. The first Zometa treatment was a nightmare but yesterday's was tolerable. Fulvestrant gives me hot flashes (which I can endure) and Ibrance has been a *itch. In March, I had a rod inserted in my femur (Pinned at hip and knee) as I was in imminent danger of a fracture followed by one large dose of radiation to help with tumor pain. The surgery/radiation really helped eliminate my mid femur pain however now I am in need of having one of the screws replaced as it is stopping me from many regular activities. I can't the screw replacedbecause Ibrance has my ANC so low. After the last 3 months (complicated with Covid restrictions), I'm feeling very blah, fatigued and finding little enjoyment. Don't get me wrong, I'm not suicidal and I understand that my life is blessed in SO many ways. I'm just finding it harder and harder to smile these days. Between Covid and cancer, I feel like my life is so restrictive now. I just want to be like the happy ladies on the MBC commercials.
Thanks for letting me vent. I think I'm just in a mini slump and need to vent to people who have been there, done that.
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Hi and welcome - even though this is an old thread, I think its one that would benefit from going back to the top of the list as its something we all wrestle with from time to time. Especially now when no one is really living life due to Covid, everything feels doubly unfair.
Did you have breast cancer previously and it was only with the sports injury they found the mets? You may want to update your stats in your profile.
I try not to consume too much media if I find it distressing, and I also have found that when I try to plan more than six months ahead, that is when I start to get the most anxiety and agitation. Not that I think I won't be here, but it just brings into focus the fact that I can't count on time in the way I once used to do. So I try and focus on a day or a week at a time and making it the best possible, even if everything is so screwed up right now. I also keep busy by working and exercising to improve my hip and back strength. My days of sports are over which is really crushing, I see people playing tennis or rowing on the river and it makes me sad as I don't think I will ever be able to do torsional sports again as my mets parked right in the SI joint where I have had problems for many years. And now with Covid I can't even go to the pool, which is my favorite thing to do in the world. I did notice an archery club nearby, so when restrictions are lifted I think Ill try a beginners course in that instead
.This is a really helpful group of ladies, so do stick around and commiserate in some of the threads - we all understand!
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Dear RK2020,
Welcome to the BCO community. We are sorry that your Stage 4 Breast Cancer brought you here and so glad that you reached out to our members for support. This community is filled with wonderful members who willingly share their experiences and offer tons of support to one another. As SondraF mentions above this is an older thread, meaning it has not seen recent activity but hopefully your post and hers will revive it. Feel free to look at other topics in the stage 4 forum and let us know how we can help you to connect and stay active here. We are here for you as well as our members and hope to see you.
The Mods
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I was diagnosed Stage II in 2016. I thought I was a survivor. Then after the New Year, I could no longer exercise. My left leg would give out on me so I stopped exercising but then pain quickly escalated. After a couple of weeks, I couldn't walk without a cane and I was 54. I went from being active to doing nothing.
Thanks for reaching out to me. It's nice to know there is a community of people who understand what it's like to be Stage IV.
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I hope it’s ok that I’m bumping this thread. I find the posts on here to be helpful and I feel less alone when I read them. Just wondering if anyone has any new or different tips that have worked for them that they would like to share? I am feeling stuck in a dark place right now and can’t seem to shake myself out of it. When I catch myself not thinking of it, my thoughts bring me right back to thinking of it. I can’t seem to find peace or joy from positive news about my response to treatment. I’m always looking forward, focusing on things I will miss out on, waiting for the other shoe to drop…because it has to, right? I’m a worrier; worst case scenario kind of person. Always have been. I’ve done some therapy but I’m not sure how much it helps. Unless you’ve walked along this path, it’s pretty hard to fully comprehend the devastation one feels and how hard it is to live every day with your mortality right in front of you. No amount of “grounding myself” is going to change that. I also feel that my husband is getting tired of hearing my negative thoughts and worries. Not because he doesn’t care or isn’t supportive, but more because of how often I express these worries, even after we’ve talked through them.
I’m also ashamed to admit that I sometimes feel jealous and resentful towards others who seemingly live these carefree, pain-free, sadness-free lives - like they were born under a lucky star. Not that I want anyone to suffer because I don’t. I just don’t want this to be my life from now on, or really anyone’s life. I wish I was more like those on here who don’t ask, “why me?”. I often wonder, “why me??”….especially when I think about my kids.
Sorry for the long post. Thank you for listening.
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hi Harrow,
Thank you for bumping the threat! I rejoined Breastcancer .org yesterday, after being diagnosed with mets to liver back in February. A hospital visit with what was originally thought a gallbladder infection, resulted in diagnosis of extensive liver mets two days later.
I am working hard on my new normal and this thread has been so incredibly helpful. I cannot see from your signature when you were diagnosed but I assume it is quite recent. Building on conversations with my onco, it takes time to process the shock of the diagnosis. High and lows are inevitable. I was very, very angry after the diagnosis - she knows me well, so one of her first recommendations was: allow yourself to be angry and resentful (for a change). But… try not to stay angry and resentful for too long.
My way of coping so far: work. Intellectual challenges take my mind off bc. Hiking - I love hiking and I am doing my best to regain shape for summer season. Enjoying my cup of coffee in the morning, which now becomes a small celebration of yet another day of feeling (reasonably) well and living life.
Sending you virtual hugs1 -
Thanks so much for bumping this thread. I have been stage IV for 2 years now and scanning the boards almost every day, but had not found this. What a wonderful thread and so helpful.
At the moment I have only bone mets and they are all small. My activities are only limited by SEs from treatment, and even those are manageable. It took a long time for my anger to dissipate, but as much physical activity as I could manage helped with that. Exercise outdoors is always my preference, but when the weather is miserable, I ride a stationary bike. I have one that accommodates a Kindle on the front and so I not only get exercise, I "escape" for 45 minutes every morning. Speaking of escaping, I wholeheartedly agree with those who posted about taking trips, even just small ones. I think of it as running away from home. No one I meet on these journeys knows that I have cancer and new people in new places always lifts my mood.
I hope more people will come here to post, as I think this thread is a lifeline.
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@lacombattante I’m really sorry you’ve had to rejoin us. I hope your mets respond to your new treatment. It’s nice you’re able to still work. I plan to return soon as well. I hope that will help me too.
@eleanora I’m glad to hear you have manageable side effects and are able to stay physically active. I struggle with motivation but I can see how it would definitely help. Maybe I’ll get there one day.
Thank you both for sharing your experience and what you do to help yourself not stay in a dark place! It’s very much appreciated.
Sorry, I should update my signature. I am about 8 months out from my de novo diagnosis, so still relatively early in this. On top of the bone and liver mets, three small brain mets were recently found and treated with gamma knife (my RO was pretty confident it would be a successful treatment for me). They think they were there from the beginning but chemo kept them tamped down as I had a strong response to the targeted therapy in my body within the first 3 cycles. I don’t know. I was mostly doing ok and now that has sent me backwards. I don’t know why I can’t feel more hopeful or positive when I’ve got things to be hopeful and positive about.
I also struggle with accepting that every person and every diagnosis is different. I like science and facts so I’m constantly searching for someone “like me” who can give me hope because if they’ve survived for x years, maybe so can I. Perhaps that’s something I should work on not doing. I find that I spiral more when I am looking for survival stats or articles even though I know they are outdated.
What does help me is reading survivor stories so I appreciate everyone who takes the time to post on all the 5+, 10+ year threads. I read them all the time and have a running note on my phone of stories I’ve come across that inspire me.
My kids are also a good distraction when I can let myself enjoy the moment with them and their activities.
Thank you for sharing! Thinking of everyone here.
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I just found this thread. Let's keep it going.
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