Who am I ?

[Annadm]

Wow, am I grateful I found this group. I was losing my mind because I had no one to turn to. I was just diagnosed with Mets to my lungs and liver after 5 years “cancer free”. I’m currently in Ibrance 125/Letrozole. I marvel at your stories of energy levels being high, working, travelling. I could literally sleep all day. I have no motivation to even brush my teeth, I’m not hungry, ugly taste in my mouth etc. Because my met is in the liver, the pain in my right side is excruciating. The only thing I’m thankful for is my CBD oil that helps with bone and joint pain. I know I can’t have my old self back, but does it get better? All I think of is that I’m 51 and my clock is ticking closer to death 😞

[nstonerocks]

Oh, Smurf. Been There, done that, been there again, doing that...First know there are treatments for your mets. I had lung mets, was treated with abraxane 5 years ago and my lungs are in pretty good shape. This year I had chest/esophageal involvement. Couldn't swallow! You want to talk about panicking. Got treated, it was rough, I'm not going to lie, but I can swallow again. We'll see what scans show. Emotionally I've been in the toilet, almost literally. There were days I didn't want to get out of bed and barely did. Didn't eat or drink. Didn't see the point of doing anything. I bring my issues to this disease, and I am not a calm centered person by nature, so harder right from the get go. I go to therapy, am on antidepressants and have xanax around if I really feel the panic rising. I use very little very infrequently. You'll feel better when you have a treatment plan and your pain is dealt with. The clock is ticking, but it always was. Now it's in our face. I don't know what lights you up, but for me it has been planning trips and traveling. It was a great distraction during tough times and I've gone to many wonderful places and hope to continue. When you are feeling more comfortable (have you discussed pain management and treatment with your doctor), DO NOT ISOLATE YOURSELF. There will be days you want to hide from the world (I binge watched Law and Order while getting radiation for weeks), but you need to get out and be part of the world. Even if it's for an hour or two. Take care of your body, feed your soul. Listen to music. I find music really calms my mood. Check out Kris Carr's website. She has a stage 4 cancer so she gets it. Things have changed, but it's a work in progress. If you want validation for your feelings, check out my original posts. Let us know the game plan. Hugs and best wishes!

[mariootsi in reply to nstonerocks]

Beautiful post Nancy. You said it all. You are amazing.

[laurac1014 in reply to nstonerocks]

I'm sorry to hear what a rough time you've been through. But I'm glad to hear you're still kicking ass.

[nstonerocks in reply to laurac1014]

I am so grateful this treatment enabled me to swallow again. Something you take for granted. I’m glad there was a treatment and that my team treated me aggressively. I’d do it again. I’m sitting in a Chinese restaurant eating sweet

And sour chicken. Couldn’t have done that a few weeks ago. So yes, I’m kicking ass and planning retirement. My next hurdle at work. Smurf, the first months are the hardest. The first year you’re trying to make sense of things and rework the way you thought your life would

Go. Never easy, but it’s not always as hard as it is right now for you. 💕

[Hidden in reply to nstonerocks]

That had to be scary to have trouble swallowing. That is the thing I get about this disease. Things I used to be able to do and just took for granted are getting harder. I am so glad that they resolved the swallowing issue bc that would have had me scared also. I'm amazed that you are able to continue to work. And so true about making yourself come to the conclusion that life as we used to know it will be different and making adjustments to fit our new normal. I hope you are able to retire soon. It sounds like you have a good hold on things now and how you are approaching it.

[nstonerocks in reply to Hidden]

I am in the process of applying for disability retirement. I didn’t know it existed until I went to a pension meeting last week. It is a NJ thing and not a social security thing and it provides so much more than a regular pension. I don’t have anywhere near the time it takes to get a full pension, but this would give me more money and health insurance. I should have looked into this a while ago but I wasn’t being proactive. Just going down the regular route. My advice to anyone else would be to take the time to exhaust what benefits you might be eligible for. No one told me about this option.

[Hidden in reply to nstonerocks]

That is what I found also. When working I always had medical insurance and life insurance equaled to my salary. I was diagnosed in between jobs but thanks to my Cancer Center resource rooms where they have two social workers, an attorney and a nurse navigator they all helped me weave through the medicaid and medicare system. I have learned more than I ever thought was possible and it is a maze so having people that knew how it worked and what I needed to do was unbelievably helpful.

I was wondering why you would not have applied for SSDI and leave your pension alone, then seen you referenced you would get to keep your health insurance. It's true, one needs to research carefully before making which route to go.

[nstonerocks in reply to Hidden]

At 66 I was going to retire anyway in June. When I was first diagnosed after initial treatment I was good to work and both my oncologist and I thought it was the best option for me. I still feel it was. Things are different now. I could have used some outreach from our personnel but the onus was on me to check it out.

[Hidden in reply to nstonerocks]

Well since I was diagnosed in between jobs and I had interviews set up for the following week, once I was diagnosed I knew I could not get a job.

I am alone and knew I did not have enough money to survive so I unfortunately had to cash in a pension I had from my first law firm where I worked for 13 years. I got killed in taxes of course for taking it out early but I had no choice.

There was no way I could start a new job with this diagnosis or let them know and they would hire me. I remember being terrified at the position I was in and that I had been diagnosed in between jobs. I thought it was the worst time to be diagnosed as I had no medical, not enough money to survive but as it turned out, it worked out to my benefit. I was put on Medicaid so I did not have to pay for anything since I had no income. Those were very very stressful times and when you have no money coming in, but still have rent and bills to be paid, that money was going fast. I went through every penny of my pension money and it killed me bc I got penalized so heavily for taking it at 57.

But SSDI gave me $25,000 in back pay which I was not expecting at all and at least I was able to recoup some of the money I had to lay out myself for months. I didn't even know or realize I was on medicaid until I went to a hospital that catered to women with low income or no insurance for breast cancer and was then told that I had medicaid. I was like No, I don't. But I did. I had try to purchase insurance on the nygovt marketplace but I was so confused that I stopped midway.

Then I started getting all these brochures from these places and I'm thinking they seen I was trying to purchase insurance so now all these brochures would start coming in and I would rip them up and throw them away without even looking at them.

Well apparently the govt. picked Affinity Health for me bc I had not chosen which one I wanted and I was eligible for Medicaid but I never knew it, bc I must have thrown the letter from Affinity away without even looking at it like I did with the others. So I had Medicaid for a year before I was even aware I had it. Now, at age 60, and being on SSDI for two years, I now have Medicare and Full Medicaid (dual coverage) which is a blessing. Medicaid even pays for my Medicare premiums every month and whatever Medicare does not pay for, Medicaid does but it was a grueling process and I am grateful for the help the attorney provided in helping me set up a pooled trust spend down so that I could quality for dual coverage.

Once I turn 67 though (God willing) my SSDI turns into Social Security and I will not be able to have dual coverage anymore but I am not even looking to worry about that now.

[nstonerocks in reply to Hidden]

I can’t imagine the stress you were under. I’m married. (Husband unemployed over a year, too young for social security) and have some savings and I’m stressed.

[Hidden in reply to nstonerocks]

I remember going to the onco and her telling me results of latest test and I was like I don't care. If I don't get this SSDI and soon, I am going to living on the streets. It was pure stress every single day to the point I was getting so sick. I was literally running out of money and had some friends that had helped me financially bc I was down to being completely broke. But of course, I could not rely on them to support me and none of them expected to be paid back bc they knew how broke I was.

The lawyer at the cancer center told me do not worry, you will get SSDI. My LL of 27 years was trying to evict me once she realized my situation. I even asked if she could use my severance for one month's rent and she said No. She kept sending me letters via certified mail, demanding the rent or to leave within 30 days. And she lives in the same coop building two floors below me. I went to Legal Aid and they told me ignore these letters, they are not legal but she is warning you. So she kept this up for three months and I finally called her and said Well, then hire a lawyer and evict me bc I can't give you what I don't have and I am waiting approval for SSDI.

It was a very very hard rough time. I then went to social services and when I found out about a program they have in which they will pay your back rent if you are in danger of getting evicted as long as you can show them that you will be able to pay it going forward. I then got my SSDI approval letter (but not the money yet) so I was able to show them that and they gave my LL $2,400. They actually came in person to deliver it to her bc I guess she had to sign some kind of paper that she would not evict me. But for the first time ever, and she always told me it was a rule of the coop board, she did not give me a lease.

I owed the IRS also for penalties for the pension thing and I told them I have no money, I have stage iv, I can't send you what I dont have. So both federal and state put me in some kind of group "Uncollectible" and told me I would not get letters or phone calls and in three years they would check my financial situation again (but in the interim interest would be accruing.

I expected to get, as I was told, my SSDI benefits first before my back pay check. they need to make sure I was not getting any long-term disability, didn't use a lawyer who would have had to be paid first, and did not owe child support.

I had about $15 left in my checking literally and for whatever reason, I would call every single day to see if they put my first month in. And then one day I called the automated system and it said $25,015.00. I could NOT believe it. I think I called about 7 times to make sure. LOL....

I got my back pay check first bc I owed nobody anything. I immediately paid my federal and state which was about $6,000 I owed them, and then paid every friend (I had kept a list) who lent me money during this period which felt good to do bc I did not expect nor did that they I would be able to pay them back. So that was a few thousand.

It made me realize how quickly one can go from earning a good salary and then being in the position I was in and having to get social services to help me. So now when I see homeless or people using an EBT card for SNAP, I realize There but for the grace of God, go I. It can happen in a minute. I am grateful for all the help I got from the cancer center.

[nstonerocks in reply to Hidden]

You must be one tough cookie. A lesser person ?myself, would have cracked. But then all that would get me is 28 days of inpatient psych on top of everything else. Bravo!

[Hidden in reply to nstonerocks]

Thanks I came very close. They were very dark times and I felt so alone but as I was told, everything worked out in the end. My friend said I could not do that (I go alone to all my cancer appts., and was alone when I found out diagnosis). She said how do you do that. I said I don't have a choice. I said you would be surprised what you are capable of when you have no choice. You have to deal with things. I am just so glad that period of my life is over and things are on a somewhat even keel now.

[RLN-overcomer in reply to Hidden]

Shalom Sister/warrior, and yesssssss Over-comer. You stayed in faith during some challenges that life brings many of us, but GOD was there carrying you through. I pray our Lord will continue to bless you with complete healing/restoration. I am thanking, and praising God for everything ,yessssssss everything, even the challenging things, because those uncomfortable times in life have allowed me to appreciate the many good times so much more. C-e-l-e-b-r-a-t-e this blessing. XoXoXo

[nstonerocks in reply to Hidden]

That resource room sounds amazing. I really needed someone to explain my workplace benefits. But it’s up to you to find that out.

[Hidden in reply to nstonerocks]

I never understood long and short term disability plans when working. Never cared bc I was healthy then. I remember being in my 20s when an older legal assistant told me I should join a plan like her. She was having like $10 a month taken out of her check to purchase some kind of special disability outside of the work place one we had that if she got ill to the point she could no longer work, she would get her full salary. She told me it will hardly cost you anything at your age and you never know. I remember thinking I am healthy, I am not going to give them $10 a month. Wished of course, I would have listened but I was young and never considered the future and lived day to day.

[nstonerocks in reply to Hidden]

A work friend dragged me to an income protection presentation at work. I’d been diagnosed a year prior. It was during a period when they wouldn’t ask about preexisting conditions. I signed up for their most expensive plan which is about 100 a month. I will get 2500 a month for two years. Even on social security and pension. It’s really going to help when I have no income coming in for a few months. We still have a sizable mortgage. Still, I don’t know that I could have done what you did. I’m in awe

[Hidden in reply to nstonerocks]

I have been on my own since I was 18. Had my own apt. at 18. Not my choice, but I had no other option. I was so dirt poor at 18 and I was only earning $150 a week but my rent was $250 a month (LOL) and the electric was so expensive bc of the large refrigerator, that I could not even afford a phone. I never had a phone in the three years I lived in that apt. To me that was a luxury I could not afford. When Tommy was alive, he would bring food from his home bc sometimes I did not have enough for enough food.

If I needed a coat or something, I always had to put in lay away. So I am used to having to go through struggles. Not easy, but when you have only yourself, you have do these things. The going back and forth to Medicaid (which is so nasty in Brooklyn) I used to leave there in tears sometimes. But am happy that is all behind me. I get $2,450 a month from SSDI. My rent is $1,325.00 but includes gas and electric. Now, that I am not working for law firms anymore, I don't need to buy clothes. I used to have to pay $150 per month for NY Metro card. I dont have that expense bc I dont work anymore plus as I am on SSDI, I am eligible for and signed up and got a metro card so that instead of having to pay $2.75 for each trip on the MTA bus or train, I now only pay $1.30.

So it works now financially but there are days I miss the socialization of work. I have not been back to Manhattan since my diagnosis. I used to go and stay with a friend for several days to get away from my apt. and living alone, but now I can't do that anymore. I don't feel as well and have gastro issues with Verzenio so I do not feel comfortable staying at somebody else's house overnight. So that is a bit problematic. Also, sometimes if somebody asks to meet me for dinner or something, I used to say yes, but then would have to cancel bc of how I felt that day. So even now though, it is hard for me to plan something too far in advance. I just try to take things day by day as they come. It's the best we all can do.

[Hidden in reply to nstonerocks]

Well I also have no life insurance. That always came with work and was usually in NY a year and a half salary. Now, I just have a few thousand left of that back pay once I paid taxes and everybody I owed.

I had a dilemma. I had to ask somebody to take care of things when it is my time bc I have nobody. It is a big responsibility to ask someone to take clear of cleaning out my apt., and doing what needs to be done. I could not ask any of my friends in NJ or LI who I am closer to since they have elderly parents, full-time jobs, grandkids, etc.

So I asked my friend in FL who is in her 60s, married with no kids. Because her mother lives here in NJ and she tries to visit her once or twice a year but her and her hubby wont fly. They always drive to NJ from FL.

So, of course, now I have to leave whatever remaining savings I have (about $7,000) left for her and her hubby. I cannot have them have to pay a penny towards this bc they are not wealthy by far and her hubby just lost his job of 30 years with loads of others are Verizon in FL.

So I told her no memorial service or funeral. Just cremate me at the cheapest rate you can find LOL. Funerals are for the living not the dead and who are people going to go up to to say I am so sorry for your loss. Nobody, most of my friends dont even know each other plus it is an extra expense.

So in my mind, I cannot use or touch that savings. I made her POD (payable upon death) so she can immediately get whatever money is in my checking account. I had the lawyer at the center do a health care proxy with her as the name and also a Last Will and Testament. I told her come, hire a U-haul, take whatever you want, and just hire some company to take all the clothes or other furniture which is older and haul out of here.

I know its a lot of ask but she agreed to do it and I also need to make sure she gets money for the week off since she works.

I looked into GUARANTEED life insurance for people like me with a chronic illness. Guaranteed never asks or checks your health or medical. But it is a bit expensive and I have to live for two years for her to get paid the either $5,000 or $10,000, whichever one I decide, to get paid the full amount. If I get killed in an accident, she would get that money immediately even if two years have not passed. If I die before two years, she would ONLY get the payments I made.

So I am afraid I will have to dip into my savings occasionally and am nervous I wont leave her enough. Its $50 a month for life for $10,000 and $35.00 a month for $5,000 worth of life insurance.

Sad thing is now that I have all this time, I do not have savings to travel someplace at all. So decided today will be the day I pick out the life insurance. I guess I will probably do the $30 a month for $5,000 payout and even if I save $3,000 from my current savings, $8,000 should be more than enough.

I am also writing her a booklet on what she would need to do. Call SS, Call CDR where I have my trust spend down money, the cheapest cremation place for her to go to, my LL's name and phone number so that she is not overwhelmed.

That was alot of fun. I was typing all this info yesterday and today I will decide which life insurance to get. I am always in fear my LL will tell me she has decided to sell this apt. but I doubt it because she stopped doing work on this apt. years ago. I think she feels like her two grown sons deal with this. It would be hard for her to rent. This is a coop building and they are very strict. Plus everything in this apt. is so old (hers is gorgeous on another floor) so she would have to spend alot of money to renovate this apt. and the coop board has very strict regulations on who can move in, and especially who she can sell to and at what price.

Most people take for granted that their family will take care of these things, but I do not have that luxury. Once again, my motto it is what it is.

[Kykakeke in reply to Hidden]

All I can add is HUGS HUGS and more HUGS! You are not alone.

[Annadm in reply to nstonerocks]

Yes, this I did too immediately. Here in Canada though, you’re entitled to 18 months retroactive if you didn’t apply right away. See if you’re entitled to the same.

[Annadm in reply to nstonerocks]

Thank you. But all I see is death in front of me

[nstonerocks in reply to Annadm]

I know what you are feeling. This diagnosis is shocking and it has a lousy outcome. But death was always all around you and someone got up this morning in perfect health and didn’t make it thru the day. You can live every day waiting to die or you can live the life you have. I do not say this lightly. I have been thru dark times and I expect I will again. But since my diagnosis I have been to England, Ireland, Scotland, Italy, wales, Belgium, Netherlands, Germany, Austria, Switzerland. Caribbean. My favorite places in New Hampshire New Orleans. Got to go to my fav TV show set, Villalobos pit bull rescue I’m not bragging. I’m telling you what’s possible. And if you can’t fly off to Europe, I’m sure you have another dream . I have had fabulous times that I would not trade anything for. I appreciate everything, including swallowing great food! Even crappy food. I have my pets, my husband (not in that order) my friends. I am so much less of a biotch than I was. Oh I didn’t think I was, but I had little patience and sometimes no filter. You are gripped by fear. It’s normal. You need to get help so you can start living your life albeit this new life you didn’t ask for or deserve. Somethings are bigger than we are. Please accept this and reach out. Going thru my last treatment was hard. I hit some low notes. I got help. Does it make it all better and am I constantly high on life? Hell no. But I’m not dead yet and either are you. Take a look around this board and read what other women are doing with their lives. It’s very very hard. But time and professional help can help you reengage with life. Death is all around us. So is life. You could live a long time. Don’t spend it all mourning yourself. 💕🙏

[Annadm in reply to nstonerocks]

You’re absolutely right! This certainly opened my eyes. Thank you so much 💕

[nstonerocks in reply to Annadm]

You sound down again today (read another post of yours). Have you tried to get help from your docs or social worker? Having someone to vent to and put things in perspective is so helpful. When I’m discouraged and overwhelmed, I lose perspective.

[Annadm in reply to nstonerocks]

Good morning! You’re so right. I was very down again today. I have a therapist but I wanted a group so I can hear that they know what I’m going through. I found one. It’s called Hope & Cope. I’m going to call today. God bless you for noticing little ole me 🙏

[nstonerocks in reply to Annadm]

Great. Keep me in the loop.

[Hidden in reply to Annadm]

Don't think like that. I met many stage iv women on another forum board that are still going strong 5 to 7 years later, still working full as school teachers and even nurses. I give them alot of credit. Now with this new medication, women with stage iv are living longer. Years ago, it was an instant death sentence but they did not have the meds we have now so we need to be grateful for that. So try not to spend your present time worrying about the future otherwise you are missing the time you are here. But I know many women who have lived for many years with stage iv. Funny, when I was told I was stage iv, I was told it was NOT a terminal disease, but a chronic illness and that I would be in treatment for the rest of my life and that the meds would work for a while, then stop and the cancer would start spreading but then they have different meds to try.

So I never came out of the cancer center learning about my diagnosis thinking I was going to die soon. I think my friends when they first heard stage iv thought I was but now realized after two years that I am still here, so they no longer think about it.

[mariootsi]

So glad you found us! I would lose my mind without this site.

I was also cancer free before this mbc dx. It is a shock and very understandable the way you are feeling now.

But know this is not a death sentence. Many women here have lived many years with mbc!

When my onc gave me my dx, she even said she had patients who have been living 10 - 15 years with mbc.

There is hope with many different options for treatment.

It is a journey just as your initial dx was but, you are still here. You are strong and we are here to support you! Keep posting and I guarantee there will be many women who can relate to your situation and offer advice and support and a real understanding of the ups and downs of this chronic illness( which is also how my onc described it)!

Have faith and hope!

Love,

Marianne

[Annadm in reply to mariootsi]

Thank you Marianne. I know you girls are all a God send

[BangorBelle56]

Hang on in there. It gets better xxxxxxxx

[Hidden]

Hi,

I'm glad you found this group too! I hope that you will feel able to join in and share your thoughts and feelings surrounding what's going on in your life. Have you just recently received your metastatic diagnosis? If so, that might be why you are feeling tired and lack motivation to get up, eat and so on. It might sound like a cliche, but things will get better. You will come to terms with your diagnosis, just as you did with your initial diagnosis. Then you can look ahead to the future with confidence, especially once the side effects and pain are under control.

I remember losing my appetite for about two weeks after my diagnosis back in 2018. I just couldn't believe what I was hearing. I was a seemingly healthy 39-year-old and I had just been told I had breast cancer. Then two months after my diagnosis I met my oncologist and learned it was metastatic. It is very hard and very isolating, especially when you learn the disease is metastatic. I only know one other woman in person who has metastatic breast cancer, and she is one of my nurses in the cancer unit. I would suggest giving yourself time to grieve for your old self, rather than trying to tackle everything head on right now. You need that time to adjust and settle into a new routine. It is not the life you would have wanted for yourself, but it is still a life. I try to look at it as living with cancer, rather than dying from cancer. We are all alive and are doing our best to improve our chances of survival for as long as possible until the cure comes.

Take care,

Sophie

[Annadm in reply to Hidden]

Thank you Sophie

[Hidden in reply to Annadm]

You're welcome ❤

[Hidden in reply to Hidden]

Wonderful response. Am I the only person that gained weight with MBC? A lot of weight. But I had to have an operation which made me close to bed bound for four months. My cancer center just got their first cancer nutritionist and I booked to see her on March 4th. She was booked up quickly. I need to lose weight and I always have had terrible eating habits. I live alone so I dont have to cook for somebody else and never ate healthy. I will refuse to eat any vegetables other than salad and cucumbers but I can try eating more fruit.

My first question when I was told I was stage iv (before we thought I was going to have mastectomy and radiation) was will I lose weight (had to try and find a silver lining) but I was told no, if anything the meds and shots will make you gain weight. That was the punch to my stomach. I said okay, no silver lining. I have though gained more weight.

In the beginning I was fine with it. Very calm, not really too upset. Funny, I think it took a full year to sink it that I would have to go to the cancer center every month for life. I guess in my head I kind of thought it would stop one day. Then it hit me hard for the first time that I would not be able to do so. I wish I could move to FL where I have several good friends, but I after months of paperwork and visit to Medicaid, have dual coverage of Medicare as my primary and full Medicaid as my secondary so if I moved out of state, I would have to reapply and go through that whole process again as Medicaid is state governed and every state has different rules. I dont have it in me to go through that again so I am stuck in Brooklyn.

[Hidden in reply to Hidden]

Hi,

I hope your appointment with the nutritionist goes well. You might be asked to keep a food diary before you are seen and then they will have something to go by as they help you make some changes. You might find it helpful to batch cook and then freeze leftovers for later on. That's what I do sometimes.

I imagine being bed bound for so long didn't help with the weight gain, but you had to give yourself time to heal.

Are you sure that moving to Florida isn't an option? Didn't you mention in another post that you received help in completing the forms for assistance? Maybe that's an option in Florida too and at least you would be near friends, rather than on your own.

Sophie ❤

[Hidden in reply to Hidden]

Well frankly in FL you really need a car to get around. That is why I have always stayed in Brooklyn bc I dont drive and I can easily get around with buses and trains and even my friends in FL work full-time. Plus, I dont really like FL. but I would have to start the whole process all over of trying to get medicaid as my secondary insurance and I dont have the energy for that.

[Hidden in reply to Hidden]

Ah, I see what you mean. We had some friends who recently moved back to Florida after living in the UK for a few years. They are trying to rebuild their lives after their house was destroyed in a hurricane. We were hoping they could stay put for a bit longer, as they had no home to go back to, but the wife's job sent them back.

Perhaps it would be best to stay in New York after all then, as you have your independence and can get around more easily. I sometimes wish I didn't have a car, but I really need it for work and getting myself backwards and forwards to the hospital. If only some of your friends were closer to you.

[Hidden in reply to Hidden]

Even if I had one friend that lived in Brooklyn as an emergency back up. I realize, unlike me, some of my friends still have children at home, have things to do on weekends when they work, some have grandchildren that they watch on the weekends OR they have elderly parents they are taking care of. So although friends, they are not family and family has to and should always come first.

I live in a residential area so even to go food shopping, I have to take a bus. Now, I started ordering from Peapod. If I had a car, I could drive to places i can no longer go bc of the long commute and bus and trains I would have to take.

[Hidden in reply to Hidden]

It sounds like you don't want to be a burden on others and I get that. I have felt that way too. Maybe you can make some connections with people at your cancer centre. Do they arrange any meet-ups for coffee or anything like that? You might benefit from some social interaction so you are not so alone.

[Hidden in reply to Hidden]

No, the social worker there asked me to attend a seminar she was having for stage ii and stage iii breast cancer patients and their family caretakers. She was afraid not many people would come and asked me if I would attend. I said No. I am not stage ii or stage iii and I have no family caretakers. I am on my own. I would not get anything out of this and since I do not live that close to the cancer center (and can only get medicaid for car service when I am going to a doctor, or a lab appt., but not for these types of seminars) and I would have to walk far to catch a bus to catch a train and then walk from the train. It was going to be at 6:30 at night and its dark in NY at that time and I am not up to the commute. Car Service would cost me $18 each way and I am not paying that to attend a seminar I will learn nothing from as I am stage iv with no family caretakers to bring along.

[Hidden in reply to Hidden]

I would have refused to attend too. Like you, I don't feel I have anything in common with early stage breast cancer patients. They have an end date of treatment in view; we don't. They will get to walk out of that hospital after treatment has ended and will be able to pick up their lives where they left off. I wish we had that option too, but we're not quite there yet.

[Barb5]

Hang in there it does get better once your settled with your treatment and adjusted to the side effects if any. It’s no picnic but it is doable July 3rd will be 7 years living with metastatic breast cancer for me hoping for at least 7 more. You came to the right site everyone here are so helpful great people.

[Annadm in reply to Barb5]

7 years! Wow! You see now that gives me hope. Way to go Barb 💪. God bless

[Hidden]

I’m like you and have no energy. I thought I was the Odd one of the group as you mentioned others travel and still work. I’m sorry you are so fatigued but know you aren’t alone.

[Red71]

Welcome to the place no one wants to be at, but loves anyway. None of us could survive without each other. I was very tired at the beginning of my treatment on Ibrance and Letrozol but that wore off after a couple of months. Pain and depression will also make you feel exhausted. You will need to separate out pain, depression, and just plain exhaustion because there are treatments. If you aren’t being well treated for pain, you will not want to do much and that will make you depressed, so be sure to talk to your doctor about that subject. For most of us there is some exhaustion that comes with this medication, but getting enough sleep and a few extra naps really does help. Depression is the one thing I haven’t really dealt with, although I do have moments. But again, if that is a problem, talk to your doc. Most cancer centers have social workers and pain specialists and can refer you for help if they can’t provide it. Just be sure to speak up about your needs. I love my oncologist because his treatment plan for a patient includes not only keeping you alive but having a life worth living at the same time. But he told me it would take at least 6 months to get to my new normal and he was right.

Do you have a good support system? In the beginning when your mind is in a state of shock, let people help you if possible. It makes them feel better and it makes you feel better to have people around that you can talk to.

Let us know if we can reassure you about anything. Hugs, Elaine

[Annadm in reply to Red71]

Thank you Elaine. You’re right, I must treat each problem separate. I never thought of that. I bundled it all in one and I guess that’s why the situation is so overwhelming and I see no light at the end of the tunnel. I think my depression comes from my own stupid thoughts of the fear of dying. This treatment is so new. And I’d love to hear “ been on it 20 years and doing great”. With my original diagnosis of BC I was a positive wrecking machine because I knew it would be gone forever. However the Mets to lungs and liver are inoperable and will never go away and this freaks me out. I know my thinking is silly but it’s only been 2 months I’ve been diagnosed. Again, thank you for such a wonderful reply 💕

[Red71 in reply to Annadm]

2 months isn’t very long! You aren’t being silly, you are just being very human. We all have to go through a period of mourning the life we thought we had before we get to living the life we have now. Good luck to you on the journey. Elaine

[Hidden in reply to Annadm]

Yesterday I watched an old Oprah show (it was on youtube) and I saved it to watch last night on my TV. It was cases of women and men that had been declared clinically dead and all who reported that death was very peaceful and that they could see the doctors working on them and what they said. The tunnel and the lady said it is hard to explain but I seen this radiating glowing light that I cannot even describe in human terms and I knew it was God and then she saw two people near the end of the tunnel that she was going through and it was a relative of her that had passed and he told her it is not your time yet, you need to go back and she felt like she was shoved into her body.

My own fiancee at age 23 who died from injuries in a car accident bc he choose to get into a car after a night out of drinking with coworkers with a driver who was as drunk as he was and they crashed going at about 120 (the other man, who was 35 had just bought himself a Maserati.) Seat belts laws were not in place in 1982. Took them 3 hours for fire dept. to get them out of car. Tommy was a big man, 6 foot 2 but the Maserati flipped several times. So he suffered massive injuries. He was in ICU for the entire three weeks. They first told us the first night that he was in surgery for 17 hours and they did not expect him to make it through the night. His jaw was wired shut and he was hooked up to all these machines and had a respirator in his throat but could not talk. The other driver was in ICU also but had less severe injuries due to the fact that the steering wheel acted almost like a seatbelt when the car flipped several times. (I thank God no one else was injured.)

The amazing thing was Tommy did not have brain damage. He was in so much pain, but he could write with one hand. He was terrified in the beginning asking if he was going to die. He had three older siblings all married and he had still lived at home with his father and his younger sister who was only 13.

I brought him a pair of rosary beads. I had just started a brand new job about three weeks before the accident so I still had to go to work and would go to hospital after work. He had 24 hour nurses. The nurse I usually seen on that shift told me before I entered that the night before he was code blue (which meant they expected him to die). She told me every time I check on him, he is praying on those rosary beads.

We were now into three weeks and I was sure he was not going to die, just a long recovery. But it was odd. I was told Tommy had asked for a priest and that he just prayed all day long with the rosary beads. He then asked for each one of us (his family and myself) to come in one by one.

When I came in he told me how happy I made him and that he would always be with me. I just thought okay...this is hospital talk. (When I say he told me I always mean he wrote it down).

He then wrote down I am going home tonight. I got really scared and thought OMG...he is now starting to lose his mind so I told him no. You have to stay here at hospital for a while to get better and then you will come home. He shook his head no, no and pointed to the pad. I gave it to him and he then wrote "My mother was at the foot of my bed last night and tonight I am going home with her." His mother had died three years earlier unexpectedly. I thought he was losing it. The next day was a weekend and I was getting ready to go to the hospital when his father called me to tell he passed away that night.

It took several months but I realized that Tommy did really see his mother and he was very calm and knew he was leaving this earth so wanted us all to come one by one to say good-bye. He was not scared at all. He was very peaceful.

So watching these ladies report on their near death experiences, practically all of them said when they went through the tunnel and was in the light, they immediately said they realized they were home and recognized and it felt familiar. Many of them did not want return but were told it was not yet their time and they still had things to do.

I no longer fear death. I think we came from God and when it is our time, we return HOME to God. So many of the people who had the near death experiences all used the same wording. They felt like they were home again and that to describe what they seen was hard bc there was no comparison to what was on earth and the beauty of all they had seen and the love that was so strong.

Doesn't mean I am in a rush to get there, but feeling a peace of realizing we still exist and wonderful things to hard for humankind to understand will be waiting for us. It was eye-opening. Even people of different religions and cultures have explained their ndes the same exact way, with the tunnel, the being of light that was love, and being told they had to return back to their bodies as it was not yet their time. So I take a huge comfort in that that those I loved but loss on earth, I will be with them when God decides it is time.

Sorry, its wordy, but it left such a mark at me at 22 (we were engaged and were planning on getting married the following year) and I have never feared death from that point on.

Google Oprah show on Near Death Experiences. The lady who had her NDE, Betty Eadie wrote a book on her experience and it was on the NY Times best selling list for almost 30 weeks. "Her best-known book is the No. 1 New York Times bestselling book Embraced by the Light, (1992) describing her near-death experience. "

[Hidden in reply to Annadm]

Welcome.

2 months is early days for this emotional rollercoaster. You will settle, as will your symptoms.

I can’t believe how quickly my 11 months has gone. I can now forget what I have for longer periods throughout the day, and I don’t get upset as much as I did during the first 6 months.

We are hearing of new things in the pipeline and of stories of no evidence of disease from people here.

You will think differently with time, and you have us to chat with

Clare xx

[Annadm in reply to Hidden]

Thank you my dear 🙏

[NShaft]

The loss of appetite and metallic taste does go away after the first few months. At least it did for me. A friend passed on some advice she gave her husband when he was worried about death. She asked him if he planned to die today. When he replied no she said to get going then and live today. I found that really helped me. I dont want to waste time today worrying about what is coming. None of us knows what that is anyway. It did take about 6 months to work through the initial shock of it all. Now a year post dx it is not always the first thing I think about everyday. This board, therapy and good meds if necessary, and time make this all doable. Hang in there.

[Annadm in reply to NShaft]

Thank you

[hdhonda]

Smurf, you have gotten some good suggestions. I am just finishing my 35th round of Ibrance. It has only been available since February 2015. There are new treatments that many of us have not yet tried and more are in the pipelines. Plan on many more years. Blessings, Hannah

[Annadm in reply to hdhonda]

35 rounds? Wow! That gives me some hope. Thank you 🙏 ❤️

[hopenowandtomorrow]

Hi Smurf: I agree with everyone else’s response here. Each week & month gets better as you adjust to your “new normal” and your body adjusts to the meds. There are many posts on this board that give very helpful tips & articles to help with the side effects. MBC is now a chronic disease, it is no longer an automatic death sentence. Live one day at a time and find things to be grateful for. This has helped me a lot. Prayers of hope & healing & long distance hugs coming your way ❤️🙏❤️!

[Annadm]

Hi! Thank you. I’m grateful for so many things. That’s what scares me. Life was awesome for me as for so many of you. Looking it that way “as a chronic disease” is actually a better way to look at it rather a death sentence. Thank you. Prayers coming right back at you ❤️🙏