Bone Mets Thread
Comments
-
Oh, one more quick photo. Fabulous restaurant in Panzano, with reasonable prices and million dollar views.
0 -
Hi Everyone, Just want to wish everyone a Happy New Year. Praying this year brings breakthroughs and all kinds of wonderful moments for us. Love all the pictures and the avatars. I changed mine too. Feeling full of happiness and hope today. XO
0 -
Hi Bosco and Caren, just wanted to say thanks for your info on travel insurance. Bosco, I have the EHIC card but it's travel cover I'm unable to get. As soon as the travel agents heard that I've stage iv cancer, on treatment and heavy pain meds they refused me cover even though my onc wrote a letter stating that I'm ok to travel. Also some of them only cover UK residents. I'm such a wuss I'm scared to travel uninsured as I'm convinced something will go wrong and I won't be able to get home. I'll try again as I'm more motivated now to visit DS3.
Cristina, Florence is just gorgeous! Milaandra's photos and tips are enticing..
Hugs to all
0 -
Hello Ladies,
Deanna and Bosco - Congratulations on the cancerversaries! I'm so happy for you and encouraged by the news.
Patty - so glad you got some good results! You were overdue!!!
Cristina - Hang in there with the upcoming scans...sending positive thoughts! A trip sounds like perfect therapy. If we could get our Oncs to prescribe them we could add them to our medical tax deductions...I loved Scotland and Spain...we went to Sevilla during Holy Week and it was like visiting the 1300s. Kids do love cruises though...so many good options and some are very reasonably priced.
Kiwi - The new house looks so cheerful and the fruit sounds delicious. Those of us in the Northern Hemisphere appreciate sunny photos right now.
Milaandra - The photos of Italy make me want to visit! I think Volterra will forever be populated with vampires in my imagination...never should have read those books.
Thanks to everyone for the photos! Love seeing them.
New question for the group...did you all tell extended family, friends and co-workers when you first received your Stage IV diagnosis or limit the news to immediate family and friends?
This has been my only dx and so I have no experience with this. Eventually there won't be a way to avoid it, but for now I'd prefer to avoid calling outside attention to the situation (and turning on the tears). I visited my brothers, who do not live nearby, and had such a good time being "normal" last weekend. Telling them would have changed the tone of the gathering so I didn't bring it up.
My DH, on the other hand, seems to want to tell the world. (I know he is establishing his own support network and that is a good thing.) Trying to hit a balance since there is some time ahead.
Would love to hear from others how you managed sharing the news and how you decided on an approach. Is there a way to control the message or is that a fantasy?
Thanks for any tips!
Kathryn
0 -
Hi Kathryn,
Being 4+ years out, everyone knows that I have stage IV bc, and I don't mind a bit. I told people as needed, but told everyone in my family right away because we are close and I needed their support (and they would have killed me if I hadn't). I was able to control the message, give as much detail,as I wanted and set the tone for how the message was received by my own attitude. I was frank, pragmatic and optimistic. I encouraged those with questions and concerns to come to me directly as I said it was important that there be no rumors, gossip or speculation. There were only one or two people who fell apart and to be honest, I knew I couldn't control anyone else's reaction.
I teach in a small elementary school district, where almost everyone knows me. By being forthcoming, I took charge of the information, not the rumor mill. In turn, I received incredible love and support. I have also been a great source of support for a few teachers and parents who were dx'ed with bc after me. I'm glad that my openness gave them comfort and courage.
I will say that others have reported less positive experiences than mine, so my advice is to know your audience. For me, this was the best way to go and I truly run the show!
Caryn
0 -
Thank you Caryn! This is really helpful...
0 -
Kathryn, My situation was similar to Caryn's. I too wanted to be the one to tell. I was teaching at the time and the staff knew something was up so I slowly told them of course after I told my family. I found it the most difficult to tell my son who I had to tell over the phone since he lives so far away. I told my family right away and they have been so supportive, but again, they knew something wasn't right, since my mom and sister had passed from breast cancer before I was diagnosed. My brother has since passed but he was my biggest support of all. When my husband was diagnosed with cancer, he would not tell a soul. Not his mother or sister, for quite awhile, so we are truly all different. However, once he did, he realized how much relief he felt. Just remember you will know when it is right for you. There is no right way, and I do think you will find most people compassionate and loving.
The photos are amazing and the new avatars are great!
Anyone hear from Myra? I think I will pm her.
0 -
Kathryn--my experience and attitude is also much like Caryn's. I am less than a year from dx. I was teaching 8th grade at a middle school I had been at for 23 years. I felt I had to share with my colleagues especially when I was stage IV right from the start. So they are all educated now as to what is metastatic breast cancer. I ended up retiring in June but I still see many of my teaching buddies. I told my family-siblings-- because they would have been mad if I had kept it a secret. I am evasive about being stage IV to my 92 year old dad. My mom died of esophageal cancer 5 years ago.
Ellen
0 -
Lwrite/Kathryn:
I was diagnosed Stage IV out of the gate in August and made my diagnosis pretty public right away, although looking back in a sort of tiered approach. Only my husband knew for about a week, then my parents and inlaws, then my husband's siblings and our closest friends. We asked this group to refrain from telling anyone until we gave them the green light. Once my diagnosis and treatment plan were solid, we then told the people we see in our daily lives: coworkers, kid's principal and teachers, soccer coach, and the people who are important to me that I rarely talk to: college roomate, childhood friends. This happened over about a month. Then, about 6 weeks after diagnosis when I decided not to go back to work, I sent an email to all of my professional relationships with my status. My role was very public, and I knew my absence would be noticed and talked about. It was important to me to be able to control the message so that nothing would reflect badly on me or the organization I was leaving and I would be able to maintain contact.
Being so transparent with my diagnosis allowed us to accept a tremendous amount of help and deepen many relationships. I also wanted my children to have a lot of support and options for play dates, rides, etc. if I ever didn't feel well.
While some people have certainly put their foot in their mouth, on a whole the outpouring of support we received has exceeded anything we could imagine. We have had meals delivered nightly for more than four months. Childhood friends I haven't seen in 20 years have sent care packages. Someone who reported to me at work brings me lunch every single Monday. A business colleague sent me a gorgeous Christmas floral centerpiece, four months after I resigned.
I viewed a lot of my communication through the lens of "would I care if X heard this from someone else". Sometimes I jokingly tell myself these conversations are part of my "farewell tour". I likely over communicated, but I think the interactions were what buoyed me in those first weeks and every day since I feel like I have had meaningful interactions with someone outside my family. In the short term, I needed to be lifted up and supported by the people around me and I needed there to be no shame in our family as I navigated chemo and relying on others. In the long term, being public with my diagnosis has allowed me to go through my daily life in a more profound way.
I absolutely believe we should each do what's best individually, but I have zero regrets in being as open as I have been.
0 -
Kathryn it's really tough to just be hit right out of the gate with METS.. Dani was very very young when first dx, and mets 2 yrs later. She told her sisters immediately, well they knew something was up right away. She was nursing baby no.2, she felt a lump the size of a large olive, gyno refused to send her for mamo, she is too young he said, she was 25-26, we took care of it on our own, within 2 days she was in surgery. So yeah, they knew bcs they helped with the little ones, and there was much driving back and forth for tests etc...But, she hates attention, and she doesn't want the million questions, a lot of ppl don't understand anyway, one week she seems ok, the next she can't move, she is just about always on some tx, so we try to be as "normal" as we can, she does as much as she can, we help, she has a small business but does not have to be involved everyday directly with ppl, so she kinda gets away. At family gatherings, they think she is a snob if she can't show up, so be it. I gave up on caring for these things. So...I guess as you could tell, everyone has their story and their way of dealing with it.
0 -
Kathryn, you may be surprised at how many people have no idea what Stage IV or metastatic means, so telling them is kind of a waste of time anyway because they either assume that you're on your deathbed, especially if they can't see you in person, and/or they kind of forget about it and decide you must be in remission when they see you out and about and not looking all that sick. It's just way too complicated to explain to most people, so I personally favor erring on the side of not telling people beyond closest family & friends unless there's a reason, because once you tell people, "cancer" will forever be a part of how they see you. But whatever you decide to do, be sure your family is clear on it. I shared here a few months ago how we were out to dinner with some distant rels who were in town, and after a lovely dinner, out of the blue my DH brings up my re-dx. It was embarrassingly awkward, but it also made me realize that our caregivers need support too, which I think is a very good reason to share with family.
Love, love, love the photos of Italy! Thanks for sharing them. And love the new avatars -- Annie, txmom, Lindalou. Deanna
0 -
One of the reasons I decided to be public about my dx was to de-stigmatize cancer, especially stage IV. I know it is difficult for some people to comprehend, but if they have the opportunity to learn something from me,that's a good thing. I don't know how much people think of cancer when they see me. I tend to think it rarely crosses their mind at this point because I have been fortunate enough to be living well. Still, I am always open to answering questions and supporting those who are newly dx'ed. In the early months of my dx, it wasn't quite that way as I recovered my bmx and the pneumothorax mess, but over time it felt right to me. I am not an activist or crusader but I hope I'm helping in my own small way.
0 -
Good morning ladies, sorry to worry you all I have Been in the hospital. My DH found me unresponsive yesterday morning. What a trickety way to get Mallory here!!!! Will hopefully get discharged today. Just wanted to let you know. Will write more on a regular tablet later Myra.
0 -
I agree with dlb823. I started off needing to tell my boss, but asked her not to mention it to anyone. A few days later I decided I was okay with her telling anyone she felt needed to know. Well, it didn't take long before everyone at work knew! No one tries to help or offers any assistance, but when we're in a social situation, that's the only thing people ask me about. I have no other identity.
Two new women have started at work and sit where I do, and because they don't know, we talk about all sorts of things and we're even planning a soiree at a nasty bar
I'm a person again!I told my sister, my husband told his parents...both of them told everyone in each family...next thing I know one of his relatives made a comment on Facebook that came dangerously close to outing me. So that made me tell three of my best friends. None of the others know, and that's the way I want it.
0 -
Myra - oh my gosh! Good thing you were not alone! Can't wait to hear more from you and praying all is fine, take care.
I was dx'd stage 4 from the start and chose to be open about it with family (I have no children) and friends from the beginning. I echo what Deanna said about people having no idea what stage 4 is all about. It's been a long education process but well worth it. People see me walking with my cane and sometimes ask why. I welcome those situations and give them my blurb about stage 4, I guess it's my way of making people aware of MBC and it's an eye opener for them. My small contribution to MBC awareness.
A good day to all. My Onc referred me to an allergy specialist after my iodine reaction. Appt this morning. Not sure this is necessary but it's another specialist in my collection!
0 -
I think the most important thing in deciding how much you disclose about your bc is what you yourself are comfortable with . I don't think anyone, whether private citizen or public figure is obligated to tell people about their health. I do, however, think that as many become more forthcoming, the stigma will be lessened
0 -
Hi everyone,
I'm new to Stage IV and this thread. I was diagnosed on 12/22 with a met to the sacrum, five years after initial diagnosis. I am scheduled for five rounds of SBRT targeted radiation starting on Friday and then ER+ hormone therapy (not AI since it clearly didn't work).
I'm still in shock since I thought I was in the clear as a 5 year survivor. I'm 43 with two elementary-aged kids. I am super healthy and did all the dietary changes after the first diagnosis but am considering going to the Block Center for supplemental integrative treatment after radiation.
What advice would you give me?
Thanks for your support!
0 -
Cita, I always hate to see lower stage women show up here after years in the clear. You're doing all the right things… I don't know anything about the Block Center, but supplemental treatments certainly couldn't hurt! I've been dealing with stage iv for 6 years now, and although it hasn't always been easy, I have hope for more years. Once the shock wears off, you will find your footing!
Milaandra, I so understand your "i have no other identity" comment. Which is why I've tried to be private about my diagnosis. I hate being "the cancer lady" more than anything! The sad faces, the constant "how are you feeling?" questions… yuck.
0 -
Myra- How scary! I'm glad you're in the hospital and hope to hear more from you later!
Miilandra, thanks so much for the photos, really makes me want to plan that trip. For now though, my husband wants me to reapply to little pink houses of hope and "for Pete's Sake" something he found online. Both respite trips for people with cancer.
I have told pretty much everyone about my diagnosis mostly to get help w kids and meals. Not getting very many meals anymore but for a while there I was. Sometimes, DH wants to talk about my illness more than I care to share, so that can get under my skin. But he also needs support, and I get that. I have been educating people bc as Deanna said, they have many misconceptions about cancer that I've needed to clear up. I am tired of being the cancer lady, but it's too late now, and what can I do? I do try to change the subject and talk about different things with people.
Cita- welcome to the forum. I am sorry you are here. Sometimes it doesn't matter if you "did all the right things" cancer has a mind of it's own and will come regardless. Please feel free to ask questions and seek support here, it's all I do, and these ladies are great!
0 -
A warm welcome to you Cita!
I had a very informative visit with allergy specialist and thought it was worth posting. Doc said it was not a reaction to iodine (because I eat salt, sea food etc.) but rather a reaction to a substance used to mix with iodine called Isovue. There are other substances available that can be used with iodine, but that requires allergy testing. It is a future option for me but because of drug interaction with my anti-depressant (Zoloft), the latter "masks" the allergy tests and Zoloft would have to be stopped/replaced for a minimum of 3 weeks before proceeding. Doc said repeated use of Isovue may be the culprit.
0 -
myra. - oh my. What happened? Hope you are home soon.
0 -
cita, I also have limited bone mets. Still limited after 5 years. If it stays that way, one bone met to the sacrum will do you no harm (I have one myself). It's a big bone and can handle a met. Hopefully it will go away with treatment, but as long as it doesn't spread more, your life will go on relatively the same, albeit some med changes, which can make a difference with side effects.
Myra, oh no! Such a string of bad luck lately. Please tell us what happened when you can. Unresponsive is scary, to say the least. I'm glad Mallory came... There's ray of sunshine for you.
Stefanie
0 -
Oh, Myra -- how scary! I'm so sorry that happened to you, and will be waiting to hear that hopefully it was a fluke thing and you are okay! Hope you'll get back to us as soon as you can. In the meantime, virtual hugs & prayers for a complete recovery from whatever caused it! Deanna
0 -
Myra, I'm so sorry you ended up in the hospital. I hope you are feeling much better very soon.
Kathryn, I had my mets diagnosis about four months ago. I told a couple people and let my DH tell a few people, but looking back, I wish I'd just sat on the news for three or four weeks to really let it sink in by myself before deciding who needed to know. I agree that a lot of people don't understand what metastatic disease involves. I have actually been kind of shocked with the lack of concern shown by others, especially some of my family. If I could, I would take back telling a few of them.
Cita, I'm sorry you had to join this club right at the five-year mark. I know the five-year mark doesn't mean much in breast cancer, but it still seemed like a victory, until it didn't. Our situations are similar. I noticed my problem one day before the five-year mark, after getting a great health report last April. It's shocking when you go from what you think is very healthy to this.
With all the sad news here in the last couple weeks, I didn't come back last week to give my good report, but I got a PET scan report with no evidence of active disease last Thursday. I don't know how long that will last, but I'll take it! Patty, I was happy to hear of your result, too! It sounds like we were on the same schedule last week, PET scan on Monday, doc visit on Thursday. Good news to start the year with, right? I didn't realize how sad and sort of guilty I would feel that others are not getting such great news, though. I suppose this is natural and that everyone's time eventually comes where they are the ones who get the not-so-great report, but I wish everyone could get at least some temporary relief.
To everyone else (I know I'm missing some names but have read all the posts), you are in my thoughts and prayers always, and I appreciate each and every one of you.
0 -
Hello everyone!
Myra, so scary, I hope you're back home soon.
Linda, good to know what caused that scare for you. LL49, great news, we must celebrate the good, it helps when we have bad.
Cita, welcome. I too had passed my 5 year mark & was told I was pretty much clear when I found out I had mets. I have one to my sacrum which is annoying sometimes. I've had it radiated but it still painful from time to time. I may have it done again.
Kathryn, I did tell most of our close friends & family when I got my mets diagnosis. It's not a secret with anyone, sometimes it comes up & sometimes it doesn't, I just play it by ear. I think it's harder on those around us, so maybe your DH is just trying to get a support group around himself. I know that my DH sometimes feels that it's all about me, when in fact our friends always ask how he's doing, but don't say anything to him, so he can feel that he's alone. We do talk about it quite a bit now. But now that I've been metastatic for 1 1/2 years, it's become a bit more "normal"
I am snowed in this morning. I know those of you who get winter will laugh at us, but there's about 4" of snow here & we won't get a snow plow for another few hours if we get one at all. We live at the bottom of 2 hills, so we won't be going anywhere in a car. (no snow tires on either car) I'm a bit worried about it not stopping, I have a bone scan on Thursday, hopefully it will start raining this afternoon.
Take care everyone, good to see so many posting so I don't have to worry about you! Cheers, Dee
0 -
Thank you for the input ladies! It does help to know that there are a variety of good approaches to coming out with Stage IV Cancer. Maybe I should just add Cancer Lady to my resume and call it a day :-)
Myra...hope you feel better soon! It seems like Cancer should give us a break during our vacations.
0 -
Myra that's so scary I'm sure glad you weren't alone. Please treat yourself well and get the rest you need. I am sending you virtual hugs and support.
0 -
Welcome Cita!
Myra - how terrifying! Hope you're home soon and you're ok!
0 -
Linda, that's really interesting what you learned from the allergy doc. Thanks for sharing it. Lots of good info' for us all to know, and I'm glad you have a definitive answer to your experience.
0 -
Myra! Hope you are Ok! Please led us know!
0
