I was diagnosed 8/2017 with METS on the bone in my spine. After having back pain & thinking it was just time for a new mattress! Moving forward, I have been on Ibrance, Faslodex & Xgeva since Sept. My family is very supportive, my daughter is a nurse in the oncology / telemetry unit & my husband has never missed an appointment with me. He wants to believe all is good & really wants me to stop dwelling on the "cancer"! I don't think he "heard" when the doctor said he was watching a tiny spot that's on my ovary & kidney. He understands I get depressed at time's, but hate's the word cancer being used in any form! He hates that I'm on a site where we can discuss our issues & feel's it's not healthy! I don't do the support groups because I'm afraid of what I'll hear if i go. I can talk to my daughter & she can be a big help. But it's hard for her since she has no siblings. We are blessed with our 1st grandchild who will be 2 in Nov. I see her a few times a month. My son-in law thinks she might be to active for me to handle, so that suck's! So, I sometimes don't even want to tell her how I feel. It's kind of funny I have never had a day where I don't get up shower, dress, do my makeup & hair! in fact my oncologist mentioned that all through my chemo I never once came in w/o the wig, makeup on & dressed nice. But that's just me & most woman who came in for chemo just didn't care or feel like doing any of that. I see both sides. Anyway, I feel like sometimes you just need someone who is going through the same thing to talk to. Anyway, that's my grip for today! Hope you are all doing fantastic & if anyone wants to talk....I'm here
Up's & Down's: I was diagnosed 8/201... - SHARE Metastatic ...
Up's & Down's
Hi Darlenejulien
My 2 cents. If your husband can’t handle too much “cancer” talk, then find someone who can. Having said that I too am very aware of overburdening family and friends about my “situation.” My sister seems pretty checked out and my husband can only handle so much angst although he is there for appointments and scans. I go to a therapist and I am thrilled to have found this safe space. It is healthy to vent share and ask questions in a community of your peers. I also have a single child 25 but he is not very present. I have some close friends and I do cut loose with them sometimes. So I encourage you to continue to seek support. Going thru this s$:t takes its toll on people and I do understand not having the willpower or energy to keep up appearances. I try to and and presently trying to reboot my yoga and meditation. I get massages and have purple streaks in my thin white hair. We need to do whatever positive things we can to support us in this rollercoaster ride. 🙏
Totally agree! Today it's me day! My 2 good friends are not near one in San Diego the other in WA. I'm in the O.C. CA., San Diego friend is my go to person, she listen's! This "situation" takes a toll on everyone I know that! Being on a medication that will be a part of our lives forever is rough. Not knowing much about the outcome of this med is even worse. But your right, get out, keep busy & hope the thin hair stops' thinning! This IS a rollercoaster of up's & down's........
Hey, yes my hair is thinning like the rest of you--only on Ibrance since January--sure didn't take long! I am today thinking that it just might be fun to look for a totally different haircut wig--a good one! Maybe a new Bonnie could be a kick at times! We have to find ways to have fun.
I know how you feel. I have 4 grown children and 5 grown grandchildren and a girl 9 yr, lives upstairs in apt 2 love it. But no one what's me to talk about cancer. They come to see me often or ask if I want to go out with them. But no one not even my husband ever ask how I feel. They are so used to me being in charge of things and helping them clean basements, paint, sew for them etc. They do not want to think of me leaving them or being sick . My husband is always thinking he will find a cure online. I never tell them how I feel, if my back hurts when I am with them I will go sit in my chair. I mostly keep bad blood results or pain to my self. The cancer center is 20 min away. I just go to my appointments by myself. I am so glad I found this site where I can ask questions and hear there good news or if someone is having a bad day I try to help them. I know family loves me and I think I will live a long time with all the good meds they have now. So I will talk about my test results and meds on here and everyone understands how I feel. Any time you need to talk you can do it here.
Barbara
Oh so true.....my husband tries to be supportive, coming to appts etc, but he is so negative. He says he wants to die first as he doesn’t want to be left on his own, he can’t cope. So that worries me but I am trying not to think about it. It is hard trying to talk to the family because they want to know everything but I want to shield them too. So this site is good to vent off and ask questions. I have a MacMillan Nurse who is brilliant and organises things for me and lets me just talk and she listens. Everyone needs someone they can talk to and really it is better if it is not family but someone who doesn’t judge you. She put me in touch with our local hospice day therapy centre. I am starting next week joining in an arts and crafts group, then they have planned some Reiki and mindfulness classes. It is an opportunity to share and be supported. Some me time which I need,
I too am carrying on as ‘normal’ as much as I can, cooking and light housework but it is tiring. I suppose I can’t shake off the old me who does everything!!
Good luck everyone!! Keep fighting!!
Darlene, I'm now working on 5 years since my MBC diagnosis. We all have to do this our own way. I told everyone and talked about it. I felt not to would be treating it like a "secret," the old elephant in the room. The upside of this is that at this point, I don't need to talk about it very much at all. I got all the talking out. Everybody knows the score and my fears. And I have a great support group around with the knowledge of people who helped me through the tough beginning. I know for certain they are in it for the full ride. That may be the hard way!
Hi! Great to hear your up beat attitude! I to also have the attitude I didn’t leave the house before looking a wreck so I won’t now...I also have bone mets and take Zometa which is similar to your Xgeva. Been on it since July16 with little to no side effects or problems...keep going! There’s always progression to worry about but there’s always new drugs to try too. I told my surgeon in March after my masectomy that I’m going to keep him on retainer for a yearly nip and tuck biopsy/tumor removal...wherever it is this year just take it out...they just laugh at me of course...lol
Have a great day! 😀💕
Hi! Yes this site is a Godsend to many of us. I am 73, unmarried (always single and very accustomed to living by myself - too much so perhaps) and since 2011 have shared a house with my sister which took some getting used to on my side! She was a nurse and toward the end of her working time cared for the ill and elderly in their own homes in the UK. Partly because I have always depended on myself and partly because I don't want her to have to go back to "caring" again after all she has done I don't really discuss the matter with her at all though she comes to most of my oncology appointments so is cognisant of what is going on. Maybe it is a bit of ostrich syndrome - if I don't look it will stay in the background - but I do find reading and/or posting on this site very calming and often very helpful. Wonderful to hear how well people are doing when you are entering a new phase of treatment which is scary to you. And I find it important too to keep up appearances (never a very stylish sort but at least tidy!) and to try to keep doing what makes me happy as long as I can. I love my garden and the birds etc and, of course, our camping trips in the Kruger Park - luckily only an hour or so away from home. Long may it last - for all of us.
Hi, I was diagnosed also April 2017, at first it was stage 2, than the PET scan revealed a leison on my hip, but it was so small they had to do a bone biopsy to confirm, never had breast cancer before, started on femara and Ibranace last scan was NED, still working full time..my husband and girls are supportive but that because I look fine that I am they do not want to hear the negative, people at work never ask how I am or seem to care it gets very depressing..thanks for letting me vent..
Screw the people at work that don't care about you. Concentrate on those that love and support you and get some support to release the feelings about those that don't have your best interest at heart. You will get there.
My husband is very similar doesn't want me to really talk about it and friends and family except for my mom do not really understand what we go through. There are a couple of ladies in town that have stage 1 and they've had radiation and a lumpectomy and i get lumped in the same category because they are "cured". People do not understand i can not be cured only treated and since i look fine i must be well. But i get up everyday and get on with my life, but it is hard not to be able to talk about it. I wish you the best and keep that grandbaby as much as you can. My little mess is one and i can't help but be happy whens shes here.
I hear, "Well, you look good" but no one can really see inside of me! I put on my happy face & carry-on! I'm also very happy when my granddaughter is here, a very active 19 month old will keep you going!
I feel and « hear » all each of you is saying and like many of you usually am the rock for the family. I think an outlet for productive discussion is critical but otherwise I only talk about it if side effects affecting me or new results come in. My approach is to focus on the good stuff and all I am grateful for each day, and not let this lousy disease burden my relationships or take over one iota more of my life than it has to! I will not be defined by it and try to mix it up with « the living » while I can.
Ps: it is a lot more fun and talking about it with the right folks a lit more rewarding
It sounds like you have a supportive family. My husband can be hesitant to me joining boards. His concern is I might get wrong advice or there are some boards out there that can be negative. I’ve reassured him my board is helpful and positive.
That’s great he comes to all your appointments. My husband does too although I recently made him stop coming for labs. My oncologist is 75 minutes away at this time.
My dad won’t use the word cancer and he had bladder cancer. Some are just that way...I met with a hypnotherapist to talk to cancer. One of the exercises she had me do was redefine its role in my life. That was beneficial.
I like to look good too. For me, it’s part of feeling good and normal. I was diagnosed January 2018 w MBC. Prior, I was stage 2 diagnosis in April 2016. Nice to meet you. ❤️
Gosh, don't they have a lab closer to your home and they can email or fax results to your onco? That would take a lot of stress off you, maybe look into it....
I am a big believer that one needs to talk about this. The more you say it, the less frightening it begins to sound like and feel. You need to do what YOU feel is best for you. What your husband feels about what is good for you is not necessarily what IS best for you. Does he need to know that you are on this site? Cancer is such a very personal issue and it is super important that you go with what is right for you to deal with this struggle. Your family's support is very important but in the end, we are alone with cancer in our bodies. Do what you know in your heart and soul is best for you as you walk through this. We are ALL here for you and are ready to share and support. I have found this site to be a great comfort to know that others are going through very similar symptoms, treatments, etc. I respond almost every day. We keep you in our thoughts and prayers.
I agree wholeheartedly! I've had troubles with my back all year and just got diagnosed with bone and liver METS. This is my 3rd time dealing with breast cancer. Second time around I started a support group myself as I had just moved to a new town, didn't know anyone and was dismayed at there being no local support. Even though I never went to support groups the first time I felt the need for it when I moved. The group started with 6 and doubled with time. I was lucky to find someone willing to give us a space free fortnightly. So we met for about 1 1/2 hrs every 2 weeks and everyone really appreciated having that outlet. It doesn't matter how supportive your family may be, you will still feel the need to talk with others going through the same thing.
Darlene, and anyone else, if family won't let you talk about it then they are not giving you the support you need. Not their fault, they have their own needs seeing their loved one in this way, but they
Must understand your need to speak to others and not give you a hard time about it. Only you really know what your heart and soul needs. It's soul nourishment.
And I have to add that I have looked at many online communities in the past but they never appealed to me. I found this one by accident and immediately you guys caught my attention as being supportive and positive. So here I am!
I also help run a program at my local Y called Livestrong at the Y. It's a free (National) 12 week program for cancer survivors so please look up in your area and see if they run one! Everyone who comes finds it very helpful.
Fitness is what I teach so this is especially hard for me to find myself in this situation. I haven't started on the ibrance yet , hopefully next week, and I am praying that I can continue with my work. The stories here have been encouraging. Good luck to all!
Hi Darlene. Sounds to me like your husband needs someone to talk to! Mine was a wreck when I had cancer first in 1994. If you can feel ok with not talking to him about the C word and you have others to lean on, just do that. None of us gets the fairy tale scenario. I’ve learned that no one knows quite what to say so they’re either over solicitous or distant or oblivious....or just right! Do what you need to to feel happy and healthyish! You can say whatever you want here!
Yes! Darlene I meant to add to my post above. , Is there a social worker service available for you and hubby at your hospital?
If so, arrange for a consult with both of you together, or you alone first. They will know how to explain to your husband your need for talking to others and they might have materials available that explain in simple terms the cancer patients needs. It won't be confrontational but supportive for all. He , I'm sure, needs some too.
Thank You everyone for your thought's on this very scary subject! This site is truly a Godsend! My husband & I just celebrated our 44th anniversary yesterday, just moved into a new home (a month ago) so we have been pretty busy. I explained that talking helps me cope especially when I read something from this site that is amazing! He understands, just wants me to feel good....all the time! It scares him if I look "off". I married at 19 (I'll be 64) so it's always been him & me. He wants to keep it that way! LoL Thank You ladies😘
Good for you Darlene. If your husband can't handle it- I agree, seek outside help. My husband goes to appointments, but he's not a really good listener. I've only told my immediate family and one best friend. My sister asked recently how I'm feeling, and when I told her "not that good" she was surprised. I'm still running around doing everything else. I just told her I'm working on short term goals. 2 years of planning for now.
I'm not a big sharer and once you tell others you can't take it back. I have since joined a group that I enjoy. There is a freedom to say how you are really feeling, and everyone gets is. This site is great too. Stay in touch and good luck.
I think my husband just wants everything to be fine! I took care of our 1-1/2 yr old granddaughter over the weekend & there is no way in hell I'd EVER let on how tired that made me! LoL
Wow, we could be twins, and our husbands as well LOL!!! Hub has been to every single appt/test with me as I don't trust myself to drive anymore, reflexes are not what they used to be, and my vision is off a bit. At first appt I saw a Breast Doctor, not an onco, and just loved her. She immediately swooped us into her arms and ordered every test possible right then and there, including biopsy, lucily all tests/procedures were available in the same building. Have Stage IV Metastatic in R breast, with lymph, skin, lung and probably bone mets. She diagnosed me that very first day except for type, i.e, HER- or +. My husband heard a totally different story than what she had to say and he was sitting RIGHT THERE. No sense in arguing about it with him. He went directly into denial and anger and stayed that way until recently. Naturally, the anger got directed at me, and not the cancer. When I wobbled or could not stand for more than a few minutes, he would say things like what is wrong with you anyway, or you'd better get yourself together. I cried in private. At 2nd appt, I asked doc to take her time explaining in detail, as hub was not hearing it, and she did spend almost an hour with us, and at least had results I was HER-m so opened the door for options. She talked about Ibrance and Letrozole, but wanted me to see onco who would order a PET, so did all that. OMG, I miss my breast doc. Liked onco at first, but will be firing her very soon and moving on. Have seen her monthly, with hub, and he only gets pieces of what she says, she is very brief and sweeps thru everything, flashing the chart in front of me and pulling it away. Hub has yet to look at my breast, which is pretty ugly, but at least the open wound has closed. Appt last week told onco I had quit Ibrance after round 4, was simply way too sick. She said well, wait til you see what I put you on next, then you'll really be sick...!!!!!!!! Hub and I just looked at each other, was like a light bulb lit over his head. He got it. Now we can talk about it openly, and have pretty much for the past week. I had felt so alone also, but realized he had to go thru the stages to get to acceptance in his own way and own time. Stubborn as a mule. I was in acceptance before I even saw any doc, had been living with it for over 3 years without insurance in the boonies of Maine. As a former respiratory tech, hub of course interested in the lung mets and have his full attention now. I am in FL, have a dear friend in NJ who is fighting triple negative, double mastectomy and every treatment in the book, and is now doing radiation, will go on powerful oral chemo after that. So I have someone I can relate to, and we talk on the phone every 2 weeks or whenever we feel the need and commiserate together and she can vent and I can vent. She lives alone, but has a good network of friends. I have been too sick to make many friends here, we are only in our 3rd year in FL, so have to depend on the small handful of friends from afar. What you have to realize is this is a very uncomfortable situation (and this goes for everyone on here) for most people, friends, family or whomever. They don't know WHAT to say, they don't want to upset you and are so afraid they will say the wrong thing, so they just stuff it in the closet and talk about anything else in the universe. Most are not that knowledgeable, they probably never had someone close go thru this. Hub and I both worked for doctors, hospitals, home and hospice care, and had our own home care business at one time, and I have been hospice caretaker at home for my mom, dad and MIL. So we know the routine. This is a very typical reaction. They figure sometimes it is better to just hide from you because they can't deal with it or don't know how. Almost like being terrified of public speaking and getting on stage in front of 1,000 people, they are truly that scared. It may be good if you start small, ask one of your best GFs out for lunch or something, and just say, look, we gotta talk. I need you right now, and please let me speak, and let it all out. Tell her it is okay to talk to you about it, and you would really appreciate it if she would call now now and then and not avoid the subject, but truly ask you how you are, what have you been thru lately, what is doc saying, etc. Tell her you NEED her support and shoulder, and you will help her learn how to do it. And listen to you, whether you cry, she cries, whatever. And you need to listen to her concerns as well. Believe me, those who are close to you are going to feel really horrible if you should succumb down the road, it's a shame, they are not going to be able to live with themselves for a very long time and grieving will be much longer for them. Tell them you understand how they feel, but to please try. Really, at this point, nothing anyone says or asks bothers me one little bit, I totally appreciate outright blunt and to the point questions. Plus you are giving them a bit of education, because someday something like this will effect them in a direct way with family or even themselves for sure. Once you get thru it with one friend, work on another, and maybe before long you will have your own little luncheon group, and maybe not even talk about cancer that day. For your long distance friends, write them each a letter and tell them what you have been thru and are going thru and how you are feeling and tell them it's okay for them to call you and ask questions, whatever they may be, but to please not ignore you, that you NEED them. Maybe all of this will work for you, maybe not. Most important that you continue to get your hub on the same page. Cancer is not a dirty word, it is an evil word, and the more you can beat that down, the better. When he asks you how you are feeling, tell him, and then let him digest it. Men just need more time to get their emotions in check, and you know the last thing he wants you to see is him shed a tear, when in fact the opposite is true. Why do we have to work so hard when we already are, but it's just a part of it and you will feel a whole lot better if you can just get a handful in your corner. For those who are approached with "gee, you look great!" when you know you look like crap, for those I know well enough, just call them liars and laugh about it. I mean, what DO you say to that without being rude. Or maybe just a thanks, wish I felt that way, may open up conversation, but probably not. You know they are going to go home and tell their hubbies guess who I ran into today, she doesn't look so good. Maybe their hubs will ask if they asked you what is going on. And remember, your hub needs just as much support as you, so encourage him to do something with a buddy, go fishing or something or go to a ball game. He needs someone to vent to as well, and probably feels just as alone if not more than you do. And remember, a lot of us were brought up to believe that you don't ask a question you don't want the answer to. Wish you much luck with this, hopefully will not be too difficult for you, but truly, you will feel better just to turn one or two around. Thay are scared for you too. Always nice, if you can afford to, to send anyone who really gets on board a little inexpensive flower arrangement and say thank you, I love you. You will get thru this, hang in there!!! Jill
I needed To discuss with my daughter ( she has the 2 oldest grandsons 3 1/2 and 2) in how it seemed the boys were more cautious around me - when they would run for a hug “ remember gramma’s back” , “ grandma can’t do that” etc
My strongest feeling with this is don’t make decisions for me ( tell that to other people as well) your son in law and my daughter(s) daughter in law(s) soon realized that grandkids are what is keeping us going !
Some support groups can become just a woe is me and complaining type of group- stay away from those
This forum , I have found, is a safe place to share thoughts, fears, successes- it’s why I keep coming back 😎
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