I am so grateful to be able to connect with you brave wonderful women! I am just so scared!
So grateful: I am so grateful to be... - SHARE Metastatic ...
So grateful
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mariootsi
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50 Replies
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I totally understand!! I was panicked when first, in December 2017, that my cancer had spread after 20 years and I am now MBC. My personal experience throughout my life was not positive about longevity and BC. But, here I am living 16 years longer than any women in my family with the same disease. We are all fortunate that we are living in this time in breast cancer research and treatment. Honestly, so many new drugs, and as important so much complimentary research and information available online, that we have available to us. AND we have each other. It is a 24/7 job, truly it is. So many things we can do to help ourselves. Ask ANY questions that come to mind, I do and am so thankful for all of my new sisters here.!!
Hi Mariootsi!
Just had a conversation with myOnc about how he didn’t think I was going to make it. Like total Debbie Downer until I hit 2 year mark with MBC...But just know that there are some many of us out there with this disease and stay active...try to live like it is the chronic condition they say it is...it’s like the part time job I never wanted with all the tests and appointments but try to have fun and make some new friends with the staff and other patients...😀
Thank you so much for your kind encouraging words. All of us have a story and I hope mine will be as good as yours. You are right that we have to live like it's a chronic disease and not stop actually living. God bless you for your post!
So sorry to read about your onc! I think it's reached that point where, particularly with MBC, doctors should not be discussing mortality but continued hope with the variety of treatment options out there! God bless you! Linda
That’s awful about your onc. There is a way to paint a broad clinical picture without handing out a death sentence. The surgeon sort of did the same to me. Told me to “get your house in order.” I wanted to run out into traffic after that. On the other hand my oncologist is maybe too optimistic. But it helps me that she has a calm way of delivering the good and not so good news. And I trust her clinical judgment. That’s why I drive all the way to NYC from central Jersey. I’m 4 years in an mets in lungs better than when first diagnosed. Holding my own. Told my onc I want to make it to 70 (5 more years). She said “and more.” I’m such a pessimist I wouldn’t survive an abrupt doctor who didn’t provide much hope.
It is natural to feel scared, as there are so many unanswered questions and things that can come up. I agree that treating this as the chronic illness it is, but still living our lives to the full, is the way to go. When I was diagnosed back in March I was in total shock, as I was sure I would be given the all clear. I lost my appetite, couldn't stop crying and I lost a good deal of my zeal for life. I no longer enjoyed doing the things I used to. Then I started to see how my mental state was affecting me physically and I knew I had to change my mindset. So I gradually started to get back to my usual routine, I tried to look at the positives, rather than the negatives (ie what if I had not gone to the doctor's? I may have just collapsed one day and then I would have been beyond help), I didn't isolate myself and that helped. My oncologist always sees a bright, cheerful face, which surprised her at first. But I also want to help brighten her day too. Can you imagine what it must be like for oncologists each day? They do a great job.
SeattleMom• in reply to
Dear Sal! So glad to hear that you are feeling better! God bless you! Linda
• in reply toSeattleMom
Thank you so much, Linda. x
Garnet131• in reply to
I love and appreciate your comments about your oncologist. My experience so far through 11 cycles of Ibrance/Letrozole hasn't been too bad and my oncologist almost always seems pleasant surprised and comments on how good I look. I often see people in the waiting room who are obviously hurting/having a rough time, and yes, it must be difficult for our doctors to see this day in and day out. (I hope my comment comes across OK--not sure if I said it right.)
• in reply toGarnet131
Hello Garent131,
Thank you! Yes your comment did come across right. I think it must be very hard for oncologists dealing with cancer day in and day out. As I was sitting in the waiting room yesterday waiting for my CT scan results, I noticed that the room was packed to the gills with patients young and old. I spotted one lady who was waiting for her appointment and she looked very anxious. She went in before I did and when she came out she was in floods of tears. I really felt for her. I think I should have followed her outside and said something, but I didn't know if that would have been the right thing to do and upset her even more. What do you think?
Sophie x
nstonerocks• in reply to
A few months ago I saw a woman in the waiting room by herself looking down and afraid. I asked her how it was going and she told me she was scared. I told her I knew exactly how she felt (if you can ever know exactly how anyone feels) and I gave her a hug. I was so grateful to have my husband with me. She had no one. That has got to be the loneliest.
• in reply tonstonerocks
I'm sure the lady really appreciated it when you approached her. If I see anyone else like that again I will definitely approach them. I just didn't know how the lady would respond if some random stranger went up to her!
nstonerocks• in reply to
You don’t ever know. But most really want a connection and all you can do is try. I was brought up to “mind my own business,” but after going they this hell I’ll try to connect if the person is receptive.
Dearest mariootsi!
You will find much support and compassion from this website and all the brave and wonderful women who are sharing your same journey. Be sure to provide info about your situation and you will definitely connect with someone with exact same metastases and treatment protocol.
Please know that your fear is normal, but it DOES subside over time as you continue treatment. When one treatment fails, it seems another is available that may be a perfect match for your particular metastases.
I had so much fear when I was first diagnosed (in November 2017) that I could barely sleep at night. I take all of my meds just before I go to bed and I now sleep like a baby. God bless you! XO Linda
Linda, God bless you! I am hopeful that my fear will subside because some mornings I wake up panic stricken!
Hi Mariootsi
Me again. What you’re going thru is totally normal, unfortunately. I was a basket case for a long time. I couldn’t face anybody. Took a leave from work. Felt stunned. Overwhelmed. It does get easier. If you need help or meds, ask. I really encourage you to call SHARE. They are wonderful.
It's ok to feel scared its only natural because we don't know what to expect and we just have to hang on for the ride and keep our faith which some days can be really hard. I've seen both sides with family members the ones that were angry/negative really never fought back. The positive ones are the one's that I kept on telling myself if they can beat it so I can I and each day thanked God for another day. 3 years in remission this past May and still some days I have "pity parties" by myself because now I am dealing with long term side effects of Chemo - Neuropathy. Been on Letrozole for the last 3 years and will probably stay on for another 5-7 years. Just know you are never alone it this and keep smiling and staying positive.
You are so right. Being positive is the only way! My therapist said the why waste energy on worry when you need so much energy to fight this demon disease. She said stay in the now. I'm trying so hard!
Me AGAIN!!! Lol. Meditation is amazing for calming and centering you. Really helps you focus on right now. Most of us in this culture are either planning for tomorrow or regretting or yearning for the past. We are not brought up to live each moment with awareness and compassion.
We have all been where you are with feelings! And will be there again and again. But, in between we choose to live, with all sorts of experiences, laughter and love every day while we keep looking for avenues of treatment on the horizon and alternative choices which I think are critical. We are always with you!!
I felt the same way and figured I was just going to die in the next year, as per my family history.
But, that is not happening and I feel really good now and am having a good time wherever I can and with those I choose to be with.
Read some positive books, like Knockout with great doctor information on complimentary and alternative choices. Also, Before and After Cancer Treatment by Dr. Silver ( an MBC survivor and more!!
Yes you will!!
Also I strongly suggest two supplements; melatonin sublingual before bed and a theanine 200 mgs on empty stomach first thing in morning!! Look up research! Also check on memorial slone Kettering, herbal interaction site!! I only take a 2.5 sublingual melatonin but you May need more.
Thank you. I believe in natural supplements and I find my cancer center doesn't mention them during treatment. I think it is important to look at these complimentary solutions because people have been using them forever!
Where are you located?
You could see a naturopath only once or twice and get what you need for a general sense.
Oh sorry, don't know any doctors up there. But, I do know that you could pay to consult with a naturopath once and get a lot of good info.
May I be do bold to ask your age?
I am 68 first BC at 48
So glad you have made contact with this stunning group. The terrible fear is perhaps among the worst bit of the initial diagnosis. I remember being so hopeful after my mastectomy and for the first few months Then the scan showed a small liver lesion and basically the oncologists told me that it was now incurable. SHOCK HORROR AND ABSOLUTE TERROR!. It has taken time and a great deal of care from my oncologist but I now realise that it is not going to get me tomorrow, I am not going to suffer untold problems every day for ever. I have to get my mind round a new idea of life and live to the best of my ability every day with a chronic disease which may get me in due course but on the other hand I may also come short in a plane crash!
Use all the support at your fingertips and keep in touch with this site.
Good luck
mariootsi• in reply to
Thank you for the welcome and good luck to you as we all are grappling with a devastating diagnosis and a whole new way of life. I was 4yrs. Into ned when I got the news! We are all in the same boat but knowing you all are here is amazing!
Sister/Warrior I pray God will give you a spirit , not of fear, but a spirit of faith. Keep positive encouraging people around you. watch and read funny T.V. shows, videos, and Youtube post'. Also watch some faith based testimonials or modern day miracles.There are so many cancer fighting treatments available to us today, that weren't available to save the lives of women/men who succumbed to cancer years ago. I have a friend who is a 28 year breast cancer over-comer who has NED no evidence of disease in her body. We sister/warriors, are living longer more joy filled lives. To hear the words you have cancer would initially frighten anybody who is a human being with feelings/emotions, but don't let that initial fear stop you from fighting, and overcoming this disease. Visualize you, and of course God killing the cancer in your body. Do your part, and God will do the rest Amen
Amen!
What an inspirational story about your friend RLN-overcomer!!! And you are so right that we have to be happy and so happy things, we really don’t have a choice. Because we are going to kick butt and be around for a long time. Are you able to share your friends story? When was she stage 4 and what treatments she has had.
My friend use to go to a hospital & Share Breast Cancer support group where we met, but she is not as open about her story as I am about my (testimony). You can visit my previous post. Honestly I don't even tell her I encourage people with what little information she has told me of her NED journey. She is not computer literate, and has never been comfortable talking to groups of people. When we use to do breast/ovarian cancer presentations, she would talk for 20- 30 seconds,and then hand the microphone back to me. I was always the primary speaker, but she contributed in so many other ways.XoXoXoXo
RLN Overcomer
I have always been in awe of your power. Comes right through the screen. Although I do not share your strong faith, I feel uplifted by your mighty spirit. Do u go to SHARE meetings in NYC? I have called them but live too far to go to meetings. But I would sure like to hear you speak. Bravo!
Greetings: Sister/Warrior : Any strength, greatness, or power in me comes from almighty God, who, I am in awe of, and humbled by. I have not been a believer my entire life, but yes most of my life. I know I would not have gotten through some of life's challenges, if it were not for my faith. I have friends/loved ones of all faiths, and some friends that believe in the universe. Each, and everyone of my friends/ loved ones would not let any harm come to me, or, I let any harm come to them if it's in their power ,or my power.
I haven't been to a Share meeting in months. I have been busy enjoying this summer of activities, family reunions, my church ministry, and I am my AARP Chapters Outreach Chairwoman.
I am also trying to help, and encourage two loved ones who are diagnosed with cancer. I am also little by little scraping, plastering, sanding and painting my apartment, thanks to You Tube (smile) Yessssss I am woman here me roar. I have wall, and ceiling water damage, which was caused by a broken pipe in the overhead apartments. The universe wasn't built in a day.
I don't know where you live, but I think you can join one of Shares phone groups. You may also be interested in starting your own Share group, as long as you fit their criteria/requirements, and training. Or maybe you know someone who might want to head your local group. God bless you and all of my sisters/warriors fighting for victory over this disease Amen XoXoXoXoXoXo
Just BELIEVE, there are so many treatments for this terrible disease. It's women like us that have raised funds for research for this ugly 4th stage cancer. Recently my family raised $7000 for breast cancer research! Hang in there and kick cancer's ass!
Wow how amazing you raised so much money! Hopefully we all will kick cancer's ass!!!!!! God bless you#
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