To all you newly diagnosed women! - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

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To all you newly diagnosed women!

SunShineEveryDay profile image
ā€¢144 Replies

Hi guys! šŸ™‚

Iā€™m sharing a story with you today that quite frankly I havenā€™t been ready to share with the world yet! Not because itā€™s a secret or Iā€™m hiding but because I didnā€™t want people to feel sorry for me and treat me differently.

I was told I have stage 4 breast cancer and have 5 years to life.

I say bullshit! Not because Iā€™m in denial but because that info is simply outdated! There are people living with this for 10, 15 and 20 years that live amazing lives!

I say, it a gift! A second change at life! A wake up call to truly start living, take control and design our own life as we are ALL meant for more like Dean and Tony said! Because of them, I am putting myself out there to help INSPIRE newly diagnosed women to overcome their fear, take control and live with love, gratitude and peace!

I say, take that trip you always wanted to take!

I say, my love for life is so much stronger than my fear of dying! Love & lights over doom and gloom! We are so much more than the bad things that happened to us!

I say go experience every sensation in this amazing thing called life!

I say, it is NOT important how long you or I will live, but HOW we will live the rest of our lives!

I say, to be fully successful in life is to live life to itā€™s fullest!

How do you live your life today? Would you change anything? We donā€™t know how long we will live but neither does the rest of us!

People donā€™t call me Sunshine for nothing! Letā€™s go on this journey together! Weā€™ve got this! šŸ™‚

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SunShineEveryDay
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144 Replies
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Discocat profile image
Discocat

Dear sunshine, While I sympathise your situation I'm not sure that we necessarily need guidance in the way you advocate. I can only speak for myself...but nothing that you've said is suprising...we pretty much have all had a similar diagnosis and the time frame you mention is the general one given to all stage 4 MBC....if you Google, not what personal Doctors would have mentioned as in my experience they mostly don't want to give any time frame at all.

In my case, one year into de novo diagnosis and with a teenage son about to go to uni, I don't want to reinvent myself and travel the world. I want to go on living as normal a life as possible...being a mum.

Thank you for the sentiment, and good luck to you...but I'm quite capable to plan any trip I might take without professional assistance.

Best wishes zoe

Discocat profile image
Discocat in reply to Discocat

Also just to add...I think this site is more for sharing our worries and treatment experiences etc...than needing to have a poster girl.

Pbsoup profile image
Pbsoup in reply to Discocat

Hmmm there's a bit of (likely unintended) "ouch" in that comment. I think Sunshine is just sharing her outlook as a way to express how she herself copes with this shit diagnosis .... The great thing about this forum is we can choose to read or not read what people post... There are some ladies I know to just scroll by, others where I hang on their every word, Not unlike people I know in my offline world. Is Sunshine a bit perkier than your average bear? Perhaps... but maybe it's best to let it go and assume good intentions..

I don't think she is trying to "sell" travel services, just suggest that we Carpe a bit of the old Diem.

I related to what she said about not telling people. I am uber private about the diagnosis. Some know, most don't. I don't want anyone treating me differently or pitying me--or, quite frankly, having to talk about cancer unless I choose to bring it up. This is not everyone's way of coping, but it's mine.

I like the energy she exudes even if it's "a lot" as my daughter would say. For me, staying laser focused on positive things--and always looking for possibilities is how I avoid clinical depression. Maybe it's reductive denial or sublimation, but if I allow my thoughts to even start down the rabbit hole of fear, I won't get out of bed. I am very careful what I put into my brain, just like I am careful what I eat. Again some people are more pragmatic than this, and that's terrific.

It's a force of will, but like you (and like Sunshine) I want to live as normal a life as possible for as long as possible. For some, that might be travel or experiencing new things, for others like you (and me to an extent) it's hunkering down on the home front. I love my work for social good, riding my horse and spending quality time with my dogs, husband and adult children (sometimes in exactly that order). I am very aware how privileged I am to still feel relatively good. And that one day I won't. But that day isn't today.

FWIW I totally agree with you on not reinventing myself. Just the other day I was thinking about my faults and quirks and thought--should I go into deep therapy and try to reinvent myself, by releasing old habits and do yoga every day and meditate and only eat vegetables? I thought about it for about fifteen minutes then decided "Nah, why bother. " So the poor old world is stuck with me the way I am as long as I am still around.

Sorry to make this about me--and hope I'm not being harsh. Yours are posts I don't scroll by so I just wanted to speak up as a friend.

xoP

Discocat profile image
Discocat in reply to Pbsoup

Appreciate the reprimand, I can be too out spoken sometimes. No offence is intended to anyoneā€¦ but I stand by my reaction.I recently (at my last meeting with my oncologist) agreed to be made available as a cancer patient mentor at my local clinicā€¦as my Dr is so pleased with my general adjustment, overall response to treatments and that she considers me to be a ā€œpositive exampleā€.

Of course weā€™re all aware of our crappy circumstances and of course our future living with MBC is all about making the best of things (for our own good as much as for those around us)ā€¦I fully understand the sense of wanting to reach out and help others new to the groupā€¦. But surely that is precisely what this whole group is anyway and what we all do for each other.

kearnan profile image
kearnan in reply to Discocat

Sometimes posts (and emails) can come across as being a bit offensive bc people are not looking at person when they are talking or watching their facial expressions.

I have a habit of sometimes when I write emails to not finish a complete thought and will say "Well, I agree sometimes but not others......"

A friend told me she felt those dots were hostile. I laughed bc of course I did not mean for dots to be hostile but I had to explain to her that is just the way I wrote emails to friend (not professional emails). Dots being hostile.....still makes me laugh.

SunShineEveryDay profile image
SunShineEveryDay in reply to Pbsoup

Hello my friend! What a beautiful response! So articulately well written and it give me a couple of good chuckles along the way! Seems we have a lot of very talented writers on here! šŸ¤£

Your life sounds so cozy and full of love! I used to ride horseback but a friend who thought she was being funny, hit the Arabian stallion really hard on the back and it took off full speed and I ended up in the water! Had to swim to the other side to get out.

Vegetables were never really my thing. But the medicine Iā€™m taking were making me feel so exhausted, that I felt I had to do something to combat that. I started juicing a lot. Eating as many fruits & vegetables as I could muster and started walking 6.5 km a day. I canā€™t tell you what difference that alone made in my day-to-day! And I simply had to quiet down my mind and anxiety so I started breath work and meditation and Iā€™ve never felt so peaceful in my life! When you take massive action, you do get massive results! šŸ˜‚

Wishing you much love and hugs,

Mir

Itisfinished profile image
Itisfinished in reply to SunShineEveryDay

I agree friend! Stay positive and keep that upbeat attitude! Its those who stay positive that have good success! And yes I want to take that trip!! Michelle

SunShineEveryDay profile image
SunShineEveryDay in reply to Itisfinished

Thanks Michelle for the warm compliments!

Ohhhh where are you hoping to go? Good for you! :)

I just got back from the Netherlands and Italy and it was the best trip ever!!

šŸ¤—

Miriam

Bettybuckets profile image
Bettybuckets in reply to Pbsoup

So wise!

Shafight profile image
Shafight in reply to Pbsoup

Hi Pbsoup. I like your statement that you want to live as normal a life as possible for as long as possible. Me too and probably all of us! Only those of us in this situation think about that.

kearnan profile image
kearnan in reply to Pbsoup

I agree 100% with your statement.

GollyG profile image
GollyG in reply to Discocat

Hi there, maybe if you're not feeling it with someone's post, just don't reply. I think we should feel free to share on this site without fear of reprimand.Just a thought!

Discocat profile image
Discocat in reply to GollyG

I'm sorry if some have found my opinions offensive, but I find your comment to be the antithesis of what I believe this site is all about and why I and so many others have found it so supporting and useful .I do many times scroll on by and pass a post without commenting...but if I feel I have something valid to say I am going to comment.

Of course it's great to offer help and to share information...but usually that is response to a concern someone has posted. Its great to also share positive experiences and personal snapshots to show how we're living life and to connect with our fellow MBC webmates....but there's a very thin line between this and posting something that's perhaps more suited to a personal message between individuals as the contents is too specific of one angle or experience that may infact not be the view of people in that circumstance.

I do consider myself to be new to this diagnosis...I'm only now beginning to settle into my current treatment without expecting a nasty suprise everytime I get bloodwork back....so I do think its valid to have an opinion on this angle.

SunShineEveryDay profile image
SunShineEveryDay in reply to Discocat

I must say, you are incredibly smart and you write very adequate even if your first comment was a bit hurtful. But you are absolutely right! You do very much have a right to have your own opinion and post it!

It is very hard to feel happy and positive when the struggle is so real and so hard for many and I do acknowledge that.

We all do the very best we can!

Much love and hugs to you! Your son is so lucky with a mom like you!

Miriam

Itisfinished profile image
Itisfinished in reply to SunShineEveryDay

Stay positive and uplifting! Its needed in your life and ours! The battle is intense to say the least however in my life the battle is the Lords and He is my strength! Keep smiling friend ā¤šŸ’ŖMichelle

SunShineEveryDay profile image
SunShineEveryDay in reply to Itisfinished

I need to strengthen my faith! Itā€™s so nice to be able to trust so much! My mom had no believe and my dad was Muslim. (He just passed away in June). So it was always a bit confusing for me. I became catholic for my family but I think I would rather listen to gospel music in a church with a preacher! šŸ¤£ šŸ¤£

kearnan profile image
kearnan in reply to Discocat

I think, at least for me, it was the poster girl reference I found a bit off putting. But we all have days (and lately for me, it is almost all the time) that I am feeling more angry and upset about all things regarding this disease, so I have to be careful bc sometimes that comes out in the way I speak or write to others.

That is why I recently put up a post about "Death" and knowing some are stressed enough so I put a little warning, that if you are upset by talk like this, please do not read. Because I so down, does not mean I want to bring others to my level.

SunShineEveryDay profile image
SunShineEveryDay in reply to GollyG

Thank you šŸ™

Beryl71 profile image
Beryl71 in reply to Discocat

I think it's for mutual support and encouraging stories. If we're just going to share worries and concerns I'll be out of it! We've lost good people through comments like this before

SunShineEveryDay profile image
SunShineEveryDay in reply to Beryl71

Thank you sweetheart ā¤ļøā¤ļø

Flavia100 profile image
Flavia100 in reply to Discocat

Ouch!

SunShineEveryDay profile image
SunShineEveryDay in reply to Flavia100

Hahahaha! There will always be people that donā€™t agree. I realize itā€™s not really about me but about them. I try and not take it too personal although that is hard. But there will always haters. Such is life! I wish we could all hold hands and love and support each other, especially us women! We should lift either other up versus putting either other down!

Much love to you!

Miriam

kearnan profile image
kearnan in reply to SunShineEveryDay

Well, just as I found her remark "poster girl" to be a bit much to your post, I also find your reply about there always be "haters" to be the same. Just because we all have the same disease, we all have totally different situations in which we find ourselves so we all have different views on what we are feeling on any particular day.

Itisfinished profile image
Itisfinished in reply to Discocat

I have to disagree with you on that about this group. We share the good the bad and the ugly. Thats what I like about this group! And thumbs up to the poster girl! We need more poster girls in this battle seeing how it can really take a toll on your self esteem!Michelle

SunShineEveryDay profile image
SunShineEveryDay in reply to Itisfinished

Thank you so much for the warm compliments! šŸ™

I just joined another amazing support group 2 days ago, called Metatastic Stage 4 Breast Cancer Support group and the response to this same post was just overwhelming!

200 likes in 1 day!!

Hugs to you šŸ¤—

Miriam

Mary115 profile image
Mary115 in reply to SunShineEveryDay

SunShine, OOOps. The screen shot seems to have the real name of a person.. Best not to post one's own identity or another's on a relatively public forum.. You could quote the words without giving the identity..

SunShineEveryDay profile image
SunShineEveryDay in reply to Mary115

OOOPS Thanks Mary for pointing that out! Never even thought about that! I have now deleted that. :)

Best521 profile image
Best521 in reply to SunShineEveryDay

That sounds like a great site. Glad to see all the support you are receiving.

kearnan profile image
kearnan in reply to Discocat

Personally, I feel this site is for whatever a person feels and wants to write. There are no rules on this kind of board.

If someone does not agree with a post that someone else puts up, then just scroll on by. I am not a believer in supplements, veggie smoothies, or reading any new books that come out on cancer or some trial drug that maybe available in the future, etc. So I just do not bother reading them or commenting on them. For me, I cannot imagine anything more boring than reading a book on cancer and how eating certain foods will help or not help. But to each his own.

It gets problematic when people start telling others what they should or should not feel.

Suzianna10 profile image
Suzianna10 in reply to Discocat

Thereā€™s that old saying, itā€™s not so much what you say but how you say it. Your reply was a bit harsh I felt. Sheā€™s just trying to be positive x

SunShineEveryDay profile image
SunShineEveryDay in reply to Suzianna10

Thank you! Yes, my story was just to uplift a few on here. Even if it helped 1 person thatā€™s good enough for me! :)

Mir

Itisfinished profile image
Itisfinished in reply to Suzianna10

I agree with you on the harsh response. However theres always going to be that one who wants to throw a punch. And for me I turn the other cheek.

SunShineEveryDay profile image
SunShineEveryDay in reply to Itisfinished

Thank you darling! :)

Threadsgirl profile image
Threadsgirl in reply to Discocat

Hi, just wanted to say that you always seem to say what I am thinking. I think that whatever way people find a way to deal with this diagnosis is good whether they travel, find peace with family, etc is a good thing. Personally, travel is not something that I need at the moment even though I have the resources and current health to do so. I actually feel that my current life is too precious to spend time away from. I also know that some probably donā€™t have good health and ā€œliving life to the fullestā€ is not an option. You can do everything ā€œrightā€ and still progress. And not everyone has the money to travel, especially with the financial drain of this illness. I think that as long as you are honest about your opinions on this site that others can also ā€œscroll byā€ your comments if they donā€™t like them. I scroll by this travel pitch when I see it.

kearnan profile image
kearnan in reply to Threadsgirl

Amen to that reply.

SunShineEveryDay profile image
SunShineEveryDay in reply to Threadsgirl

Gooood morning!

Love this! šŸ’•

Well written! And just to be clear, it was certainly not a travel pitch, but rather for those sitting on the fence to take that trip theyā€™ve always dreamt of! :)

Take good care,

Miriam

Catali02 profile image
Catali02

Thank you for your uplifting message!

SunShineEveryDay profile image
SunShineEveryDay in reply to Catali02

Itā€™s totally my pleasure! :)

kokopelli2017 profile image
kokopelli2017

hi Sunshine.

trips are a thing of my past life.....before mbc took away my present and future plans/dreams.

cancer has destroyed my spine. I am barely able to walk. I cannot stand up straight. uncontrolled pain is an ongoing issue. I can no longer shower on my own or wash my hair. I can't go out to dinner with friends and family....let alone travel. I never made it to Italy....yes, a regret...but I have accepted it. my husband abandoned me along the way. I have accepted that as well. money is a legit worry. I am at the 5 year mark. the first 3 years were fine. the past 2 years have been extremely rough. I do not complain to my family. I come here to complain....as it is the only safe spot for me to do so. others on here probably think of me as negative. but in truth, in my real life, I try very hard to remain as upbeat as possible.....especially when around my 2 grown daughters and 3 grand-cubsā¤ļø

my home is now my world. and I try to make the best of it. but I would never describe this cancer as a gift. I just try to make it through each day. pain levels dictate a good day vs a bad day. mobility issues dictate whether I can get off my bed.

reading your post makes me feel like a loser. if only I tried harder. but no, reality says I am trying as hard as I can.

I realize that was not your intention. and I do not be-grudge you. I am happy for you. and admittedly envious. we are not all in the same type of boat. and of course people would prefer to read your post rather than mine. and I get it.

my goal for today is to find someone available to help me wash my hair....overdue! a special treat would be if I can rally support to get a wash and blow-dry at the salon. for me, it is the littlest of things....

I guess your post was just too grandiose for my state of mind today.

best wishes.

carole XO

SunShineEveryDay profile image
SunShineEveryDay in reply to kokopelli2017

Hello dear Carole,

Thank you so much for your honesty. This post was intended for only newly diagnosed women, not for you warriors whoā€™ve been at it for years!

Iā€™m sooo very sorry to hear about your situation however. If I lived close by, I would come and wash your hair myself!! I too have cancer in my spine and ribs and you can ā€œcomplainā€ as much as you want and we will all be here for you every step of the way!!! Sadly, I will be in your shoes one day but today isnā€™t that day.

Did your husband leave you because of your cancer? I sure hope not.

Iā€™m happy to hear how much joy your grand kids give you. I hope to experience that one day but my kids are still fairly young.

I wish you more ā€œnot so bad daysā€! My dear friend of 30 years recently passed away of bone cancer and she had palliative care help. Not because she desperately needed it but because it was something made available through the health system. They came to her home a few days a week and helped her wash her hair too.

Much love & hugs to you,

Mir

8576 profile image
8576 in reply to kokopelli2017

I hear you and agree. Sorry you are going through such a rough time. We are all at different stages. I do think it will get better with the research that is going on. I hope you get your hair washed.

Cheers, June S.

SunShineEveryDay profile image
SunShineEveryDay in reply to 8576

Howā€™s my favourite lady today? :)

8576 profile image
8576 in reply to SunShineEveryDay

Very good, thank you. Nice title. for me. I understand what you are saying. You are on a high and you will soon come down to earth but in the meantime enjoy it.

Cheers, June S.

Gingerann1 profile image
Gingerann1 in reply to 8576

Yes, that is living in reality. While I am NED right now I donā€™t kid myself that progression wonā€™t come, just not todayā€¦unless there is a cure. My grad baby just turned a year old on 7/21 and I couldnā€™t go see her because I had Covid but I am thankful that we will be able to travel to see her next weekend. She is 8 hrs away by car. If thatā€™s all I ever get to do is spend time watching her grow it will be enough for me. I am hopeful that Iā€™ll have many more years but living a normal life in the moment without pain is a blessing.

Shafight profile image
Shafight in reply to Gingerann1

Yes, thankful for little things that mean so much such as living a normal life without pain. Before my diagnosis and med routine, my back and hips were in such pain. I needed a cane and couldnā€™t sleep Now on meds, my life is almost normal or my new normal and Iā€™m so thankful

SunShineEveryDay profile image
SunShineEveryDay in reply to Gingerann1

Goood morning!

I am sooo very happy for you! How long has it been for you?

I mentioned the NED to my onc and she said here in Canada they donā€™t have that term for stage 4??? Only stable! Because itā€™s already in our bones. So she said that will always show up on the bone scan.

Does this mean you are literally cancer free then? How awesome is that!

Enjoy that grand baby!! Best gift in the world! Lucky you! :)

šŸ¤—

Mir

Gingerann1 profile image
Gingerann1 in reply to SunShineEveryDay

Hi Sunshine! Yes, there are many of us that have gotten to NED so in remission, never cancer free without a true cure. For me I became NED in March after 15 mos of treatment. My Onc said there are still cancer cells in my body so without a cure they can and will rear their ugliness somewhere at some point but my bone scan is totally clear again as was my chest, abdomen and pelvis CT scan on Aug. 1st. So I have reached a ā€œtotal clinical responseā€ (to the treatment) and I continue to be in remission. I will continue on my current first line treatment of 125 mg Ibrance and Fulvestrant shots until they stop working. Hopefully not for a long while. Thank you for your response.

Note: it was explained to me that if your scans show you have evidence of MBC in your bones or other organs but your next scans show no progression you are stable. That was the difference between stable and remission. You can revisit this with your Onc there but I have asked 2 Oncs at two different times and gotten the same explanation.

kokopelli2017 profile image
kokopelli2017 in reply to 8576

hi June.

thanks for your kind words. I post somewhat frequently and typically offer caring and empathy in my replies....at least I hope they are seen that way...that is how they are intended. I guess I was hoping for some of the same. many thanks to you for doing so!

but if many want to just scroll by the negative stuff....even if the negatives are 'real' and 'legit quality of life' issues, then there is no safe place for someone like me to share my reality? hmmmm. I will remember, going forward, not to post my true feelings . feeling very alone. (just thinking out loud)

once again, thanks so much for your support. and letting me vent.

sending hugs....carole XO

in reply to kokopelli2017

This should be a safe place for all to post! You are not alone!! I have rods in my back because the cancer blew out parts of my thoracic vertebrae. Luckily I can mostly function ā€œnormalā€ and I thank God for the life saving surgery I received a couple years ago. The true reality of this disease is ugly. I understand when you read a post saying that this a blessing itā€™s a slap in the face! This disease has taken away the future I should have with my beautiful children whom are 10 and 14. You are not alone and on this forum you should never feel you have to hold back your thoughts!

ā¤ļø Mandy

kokopelli2017 profile image
kokopelli2017 in reply to

hi Mandy. thanks for the encouragement. so sorry to hear your thoracic vertebrae imploded...very scary....but great to hear they were able to correct with surgeryšŸ‘. and so amazing that you are now functioning somewhat normally. lets hope it stays that way.....fingers crossed.

for me, the cancer ate away at my lumbar vertebrae...leaving my spine bent and twisted and in a state of postural collapse. bottom line...my spine is just not able to hold me upright anymore... and the bend continues to progress. unfortunately, mine is/was too advanced for surgical repair per neurosurgeon and then orthopod. I went from being fit and active to extremely deformed and crippled in a short period of time. and so painful. so no, I do not look at this cancer as a gift. but I guess if I complain, I am seen as being negative and playing the victim card? yet, this is my reality. so if talking about my journey is seen as being negative, then I guess I really do have to hold back on sharing....I don't want to be that person everyone scrolls byšŸ™„. this thread by Sunshine has been an eye opener for me. exude positivity is what I have learned.....no matter the circumstance.

I wish you many, many more years with your beautiful childrenā¤ļø.

thanks again Mandy for the kind words and thoughts.

sending BIG hug

carole šŸ’›

kearnan profile image
kearnan in reply to kokopelli2017

Did they give you any real pain meds. I am now on fentanyl 75 mg. pain patches for about two years plus she gives me 240 20 mg. of oxycodone per month for breakthrough pain.

The fentanyl patches are very rough on my skin. Severe rashes now but I do not have the time or patience to go through withdrawal. I once went to sleep and took off the pain patch (you have to change it every 73 hours) and I just wanted a break bc it makes my arm so itchy and blotchy. So I took it off that night before I went to bed and just though I will put the new one on in the morning. I just wanted my upper arm to be able to breathe.

Mistake. It took me another day and half to feel normal again. I went through withdrawal. I wish I never started on the patch but it is what it is. But I also do not have children that need to be taken care of.

Mary115 profile image
Mary115 in reply to kokopelli2017

When speaking one's truthful situation and levels of pain/lack of mobility : Rather than being seen as a complainer or playing the victim, a person can be seen as speaking the truth about one's individual condition as part of the human condition. A person deserves respect.

May you feel self respect and the respect from and for others today. May we all feel self and other respect, for we are struggling against some mighty strong odds here, and doing the best we can.

SunShineEveryDay profile image
SunShineEveryDay in reply to

Good morning Mandy!

Wow, what a journey YOU have been on! I too have cancer in my spine (and ribs). God, I hope I donā€™t have to go through what you went through! :(

I would exchange this ā€œgiftā€ with my receipt in a minute if I could, believe me!! But again, Iā€™m new on this journey and still feeling great. This post was addressed to the new diagnosed people, not to the people going through hell right now! And the true gift of appreciating spending that time with our kids now. The changes that I have made in my life so far, makes me feel in better shape than I ever have been in!! Taking a trip I wouldnā€™t have done otherwise!! Those are the little gifts I am talking about! For myself, not for everybody else!!! You do you! And Iā€™m sure you do that beautifully! ā¤ļøā¤ļø

šŸ¤—

Miriam

Pbsoup profile image
Pbsoup in reply to kokopelli2017

Please continue to post whatever you damn well please. Do it for you as itā€™s probably hard to share everything with those around you. As for other peopleā€”my two cent thought is some find inspiration in upbeat positive stories, others who at different phases of this icky journey feel solace that they arenā€™t alone in not finding it easy.

I am always very moved by what you share. I hope when things change for me , I will be half as honest and gracious as you come across in your posts. (Even if you are probably feeling more pissed off than gracious). You are not negative at all, just pragmatic and perhaps a bit weary. But please donā€™t feel you canā€™t share whatever you want. ā¤ļø

kokopelli2017 profile image
kokopelli2017 in reply to Pbsoup

hi PB. well maybe I damn well will...lol. thanks for all that. you are a very kind and wise woman and always give great advice. and yes, perhaps I am feeling a bit weary. and thank you for saying I am not negative.....I like pragmatic betteršŸ˜‰....ha!

thanks again for the kind words.

sending hugs....

carole XO

kearnan profile image
kearnan in reply to kokopelli2017

You post what you want and do not let what others may say or think about your post to affect the way you respond. I wish I could go back to the way I felt two and a half years ago. Once it was discovered in my spine, my onco referred me to palliative care which is all in one cancer center. Once I got the pain meds, what a difference. I was so so excited. For about two weeks and then COVID hit. I feel I lost the two healthier years of this disease. It was also the last time I got my hair cut. My hair is almost down to my waist and I keep it in a ponytail but it is getting cumbersome bc of the large knots I get.

I just do not have the energy to take a bus (I live in Brooklyn and I do not drive nor do any of my friends live in Brooklyn) but I really need to have it cut bc I am feeling worse and if and when I wind up in hospital, it will be easier to manage.

SunShineEveryDay profile image
SunShineEveryDay in reply to kokopelli2017

Huh??? Iā€™m so confused! June was supportive of you! She is always here to say a kind word to everybody, including you! Did you misunderstand her message maybe?

You can vent here to all us, whenever you want! And we are all here for you during your difficult journey! You can say whatever you want, coming straight from your heart! Some people have been dealt really shitty cards! That is the realty!

I think even for you, not liking my message, a lot of good came out of this post for you! You got to connect with people who are there for you and who are rooting for you, including me! :)

Much love to you and hugs šŸ¤—

Miriam

Ursula_I profile image
Ursula_I in reply to kokopelli2017

Dear Carole

Please don't not post the way you feel out of concern for others' feelings... as far as I am concerned, one of the purposes of an anonymous forum like this is to give EVERYONE a safe space to vent, to share their fears and worries as well as questions about symptoms and treatment.

For my part I am so sorry that you are going through so much and I hope an 'angel' will come into your life in the form of a new friend, or a community nurse, or a new neighbour, who can help you with the things you need. Hopefully first someone to help with your hair.

In my life with my son with Down's Syndrome, there have been turning points when we have met these angels, someone who officially is just a speech therapist, or learning support assistant, or cycling instructor, or new neighbour but somehow they have turned things around for me and our lives have got easier. They feel like random encounters but they aren't. So keep telling your story and I hope that person (who will help to make your life easier) will come into your life.

Thank you for sharing with us, I hope things get easier for you,

Lucy x

8576 profile image
8576 in reply to kokopelli2017

My internet and phone have been down for over a week. Sorry, I didn't reply right away. Certainly you should feel free to write your true feelings. If you can't here then where else?

Cheers, June S.

Threadsgirl profile image
Threadsgirl in reply to kokopelli2017

I would rather listen to you complain any day because it is real. I am sorry you are going through all of this.

kokopelli2017 profile image
kokopelli2017 in reply to Threadsgirl

hi threadsgirl. thank you for that. I really appreciate the support. means a lot.

sending hugs....

carole XO

kearnan profile image
kearnan in reply to kokopelli2017

We are kind of similar in our paths. I am at the five year mark and now all of a sudden it spread to my liver and has the tumors have gotten larger, and now she does not think the new meds (which I hate) are working according to the bloodwork. I do not have children though. I cannot imagine the stress of that also.

I feel awful most of the time now and friends slowly disappear when you can't make plans bc for me I do not know until I wake up how I am going to feel.

The only thing I am glad of is that I did fulfill two of my dreams in my early 40s. I always wanted to go to Africa and the Amazon. I was turning 40, not married, had nobody that wanted to go there, so I went by myself to Africa and had the most wonderful time. Once I realized that I could travel alone and meet people during my travels (who obviously had the same need for adventure), I then went to the Amazon by myself. Went to Machu Picchu by myself and then with a coworker, spent three weeks in Europe seeing all the must see landmarks.

So I was glad I did when I did bc now I do not have the money, and I could not travel now. I am scheduled to have a CT scan on August 23rd and already expect that it will show the tumors are still growing and spreading. The isolation is very hard to deal with.

Ursula_I profile image
Ursula_I in reply to kearnan

Do let us know how the scan goes. Wishing you courage and strength.Lucy x

debbiedo2063 profile image
debbiedo2063

Interesting comments. I really think it depends on your circumstances as to wether you want to take those trips etc. Currently I am still getting my lung drained 3 times per week and love nothing more than to plan to visit my daughter in London in between drains with my consultants permission. I have had breast cancer 10 years now at age 49 first, from stage 1 to Stage 4 over those years. My son was 9 when I first was diagnosed at 49.

We have travelled all over the world with him, all continents , lots of USA and Canada especially and I felt so well in between ops and had the energy to sightsee everyday. Heā€™s now at Uni and wants to be a travel writer. Our daughters are 35 and 36 and we did the same with them when they were young too. We have a big gap in ages with our kids. Now my priority is spending time with my 2 year old grandson who lives local and my future granddaughter due December, canā€™t wait.

Since being diagnosed stage 4, the little things matter so much, they become the important things.

My mind has slowed down which is good. The smiles from my grandson, my flowers blooming, the blackbird drinking from my fountain every morning,having time to read a book, playing scrabble with my son, realising how wonderful my kids and husband are and telling them them this.

Stage 4 has enriched my mind in ways I would not have thought as I would still be working full time not taking time to smell the roses as they say and not appreciating life. I intend to take trips, travel but only if I feel well enough to do that, I have nothing to prove to Cancer.

Stage 4 has enabled me to open up to my daughters and son and we have become closer. No one wants to be dealt this card but I intend spending the rest of my days appreciating the things in life that make me feel good and that can be anything, thatā€™s the exciting thing.

I would say do what makes you feel good but donā€™t feel you have to prove anything by smiling whilst feeling crap, those days are over, just be you, if you feel crap you feel crap, tomorrow is another day, embrace each day and appreciate those little things in life, we are all different and our priorities at Stage 4 will be different.

I really enjoy reading about others trips on here and it brings back those fab memories of our travels. So keep on posting.

Hugs

Debra xxxšŸ˜

kokopelli2017 profile image
kokopelli2017 in reply to debbiedo2063

nicely spoken Debra. perhaps I left out the part about my grandsons and the joy they bring. I live 5 minutes away from the 2 youngest.....one is 9 months, the other 3 years old. I call them my cubbies. my heart melts when they smile. I can be very silly with them and they laugh....a lot. easy audience...lol. my oldest grandson is 13 and entering puberty so I have to work a little harder but we are still very close.

when diagnosed with mbc in 2017....I asked my younger daughter to please not delay in starting her family as I wanted to be around for them as long as possible. and my daughter actually listened to mešŸ˜‰. and then she went on to have a second. yay! so yes, for that I am extremely thankful. like both you and Zoe mentioned, my family is also my priority and source of joy. thanks for the reminder....šŸ’«

carolešŸ’›

debbiedo2063 profile image
debbiedo2063 in reply to kokopelli2017

Aw Carole, they sound adorable. Im so excited to see my granddaughter born this December, best Xmas pressie ever .My grandson keeps me smiling, just had radiotherapy 2 weeks ago on Sacrum, started on Oral Chemo so a bit nausea and lung draining 3 times a week, but when he walks in the door I canā€™t do anything but smile.

Hugs

Debra xxxšŸ˜

kokopelli2017 profile image
kokopelli2017 in reply to debbiedo2063

oh I get it Deb! same for me. they sure do make you smile!

so sorry to hear of all your recent issues.....that is a lot to be dealing with. but happy to hear that your grandson is such great 'medicine'šŸ’™šŸ§ø. and congrats on your upcoming Christmas present....how exciting to have a baby granddaughteršŸ’— on the way.

sending hugs...

carole XO

SunShineEveryDay profile image
SunShineEveryDay in reply to debbiedo2063

How very very inspiring Debra! So well written that it moved me to tears!

Even with everything going on in your life with your lungs it sounds like you are in a pretty good place mentally (and truly loving life to the fullest! How excited must you be for your new grand daughter, lucky you! And to live so near by!

My oldest daughter is 22 but she says it may be another 10 years. I hope I may experience that one day. Maybe my younger daughter will have kids before then, hereā€™s to hoping! šŸ¤£

Have a wonderful evening!

Love & hugs,

Mir

Bettybuckets profile image
Bettybuckets in reply to debbiedo2063

Thank you Debra for saying what I feel

Ntash01 profile image
Ntash01

Hey Sunshine

Wonderful that youā€™re trying to give hope to those newly diagnosed- the beginning of this journey is sure the toughest and I do hope some will find encouragement from your post.

Itā€™s difficult to see the future when you hear stage 4! I remember for a very long time I wouldnā€™t buy anything for myself (and Iā€™m a hardcore shopaholic)ā€¦I just kept thinking whatā€™s the point of wasting moneyšŸ˜ž NOW I make sure I feel and look good inside & out and do exactly what I want when I wantā€¦So therapeutic šŸ˜‚

Tc Sunshine, I do hope youā€™re tolerating treatment well now and long may that continue.

N x

SunShineEveryDay profile image
SunShineEveryDay in reply to Ntash01

Goood morning Ntash! (I had a friend by that name)

I am happy to hear you went back to your shopaholic ways! šŸ¤£ šŸ¤£

Nothing screams confidence and feeling great when the outside beauty matches the inside! I mostly stay in my workout clothes so I have no excuse but to walk! šŸ˜‚

The truth is, Iā€™m feeling so great at the moment that if my doctor would say ā€œyou are perfectly healthyā€ I would believe her!! And although I do believe that when you take massive action you will get massive results, fear does creep in at times and you know how quickly it can go the other way!

Having said that, I have lived with Crohnā€™s disease for over 30 years and most of my life in full remission! I must be doing something right!

Hugs to you! šŸ¤—

Miriam

kearnan profile image
kearnan in reply to Ntash01

I had to laugh bc I am like that. Well, I need a new pair of sneakers and then think what is the point of wasting money on that. But I do have to watch budget anyway bc I am living on my SSDI. I went through my savings rather quickly after diagnosis bc I thought I would not still be here but I am. I would rather spend money on meeting a friend for dinner or ordering in food.

I found a large container of clothes in the back of my messy closet. First off, they are a size 12, 14, etc. I have not been that size in years. I found 14 pairs of pants and about 10 pairs of dungarees and about 15 tops ALL WITH THE PRICE TAGS STILL ON THEM. I think now how much money I wasted when I was healthy. I plan on donating them to a shelter. I could not believe how much I bought and never used.

But I always said I did not want to die with more than $5 in the bank and it looks like that is one goal I may very well achieve. LOL

Beryl71 profile image
Beryl71

Yes, my philosophy entirely. I was diagnosed in lockdown and the double whammy was pretty depressing, especially not being able to see people. But now having settled into a treatment pattern I can keep things in better perspective. I met my new partner after diagnosis and we're just back from Paris. In June we went to Northern Spain. My message is, it's not over til the final bell. I had 26 Cancer free years after my first tumour and I filled it with travelling the world, gaining two higher degrees and lots of charity work.

Go for it, don't be a victim. I'm on your team too! Carolyn X

SunShineEveryDay profile image
SunShineEveryDay in reply to Beryl71

My sweet Carolyn,

I absolutely love your spirit! ā¤ļøā¤ļø

I too got diagnosed while in lockdown! I had been laid off my travel agent job so at least I had lots of time to work on myself and get educated! :)

2 higher degrees! Wouwzer! Good for you! I did a 200 hour course on teaching English as a foreign language, so that maybe 1 day I could live anywhere in the world and make some money still! :)

How sweet to fall in love at this stage of your life! He must be such a sweetheart as that wouldnā€™t be easy to share with a new partner! And then you went straight to the most romantic City in the world! Hahahaha

Spain is so my favourite although I just got back from The Netherlands and the Amalfi Coast and it was sooooo beautiful! :)

My work just informed me yesterday that I will get a free trip to Europe in the Fall to either England or Ireland (because we sell that the most) How cool is that? :)

Much love to you!

Miriam

Beryl71 profile image
Beryl71 in reply to SunShineEveryDay

Sounds great. Just before I retired I started learning Spanish. And I did a couple if tefl online courses. I'm fairly fluent now and set up a charity in Nicaragua. Unfortunately I face the fact I may not be able to go again as the health risks would be high and the medical system poor. But I'm continuing at a distance. X

SunShineEveryDay profile image
SunShineEveryDay in reply to Beryl71

Oh my gosh, isnā€™t Spanish just the most beautiful language in the world? :)I speak 4 different languages (Iā€™m from the Netherlands, so we have no choice, šŸ˜‚) but really want to immerse with Spanish. I cannot believe you are already so fluent! What a great plan you had!! Without the basic knowledge of the language it is indeed hard to manage in that country. Beautiful Nicaragua!! I would love to hear more about your charity! And how you decided on that country specifically? More importantly, how can I help? :)

Yeah, I know the health risk are so high, but at this point I am so willing the take that risk. During Covid too, I went about my life as normal as possible. I just did it with logic and caution but I didnā€™t just sit at home. I couldnā€™t handle that. I do hope you get to go again one day. What an adventure! You are doing so much good for such a poor country. My heart has always gone out to South Africa. I remember even as a kid going door to door in the bitter cold winter, collecting money for Mozambique and I raised the most! šŸ¤£

It feels so great helping others. They really help us more than the other way around! :)

You are an inspiration! ā¤ļøā¤ļø

Mir

Beryl71 profile image
Beryl71 in reply to SunShineEveryDay

2newhorizons4ometepe.wordpr...

This is my website. Cx

SunShineEveryDay profile image
SunShineEveryDay in reply to Beryl71

Ohhhhh the art is soooo beautiful! And nice to see a face to the emails here. :)

Love it!!!!!

jersey-jazz profile image
jersey-jazz

Dear Sunshine ------Please continue to spread the happiness you feel. Some who need your kind of life line, will get it from you. Thank you!

SunShineEveryDay profile image
SunShineEveryDay in reply to jersey-jazz

Thank you so much sweety, for the encouraging words. It does make you want to give up but I wonā€™t, I wonā€™t! :)

LDR1 profile image
LDR1

Dear Sunshine, thank you for your positive spirit, it brightened my day. Iā€™ve been thinking about how to enjoy life as fully as possible, working within the constraints of the pandemic, health treatments etc (Iā€™d love to do a little bit of travel but for now, I canā€™t fly ā€¦ maybe a camper van?). Iā€™ve been reflecting on what it means to live fully with the circumstances we all have. For me I think being myself and being present, appreciating my connection to others and the moments in each day are the biggest priorities.Best wishes to you šŸ’œšŸ™šŸ¼

SunShineEveryDay profile image
SunShineEveryDay in reply to LDR1

I am so happy to hear that, thank you! :)

I was diagnosed in the pandemic. As a matter of fact, it is the exact reason, I did my mammogram a year too late and why a 2.5 cm tumor was found. :(

I didnā€™t think I had to rush it as there is no history of any cancer in my family. I also have lived with Crohnā€™s disease so I thought THAT was my ā€œbag of goodiesā€, šŸ˜‚

My passion is travel! I have been a travel agent for over 20 years! Nothing like a great road trip! Lucky you to own a camper van! Sometimes I think of selling my home and do just that but I need to still work full time, šŸ˜‚

Love your view on life! Enjoy the things you do today!

Hugs,

Miriam

jersey-jazz profile image
jersey-jazz in reply to SunShineEveryDay

Dear Sunshine -Yesterday, I booked a trip to South America. I am going in November, their Spring. This way, I leave room to travel in our 2023 winter and spring and camp in the summer, on the beach. I am on for whatever, as long as I am upright and thank you again for sending such inspiring words.

jersey-jazz profile image
jersey-jazz in reply to jersey-jazz

p.s. I am my own travel agent but if I ever need someone else it will certainly be you.

SunShineEveryDay profile image
SunShineEveryDay in reply to jersey-jazz

You didnā€™t! Omg! So jelly! šŸ¤£ šŸ¤£

Never been there yet! Where are you going?

Camping on the beach?? Oh, you are a girl after my own heart!!! Love it! Liveā€¦itā€¦up!šŸ’•

Hahaha ā€œas long as I am uprightā€! Gonna steal that one! šŸ¤£

My friend who was taking a cruise once said ā€œif I crook and they have to throw me overboard, Iā€™m donā€™t give a shitā€! Because she didnā€™t have insurance and she was really old! Hahahahaha

You go girl!!!

Big hugs and love

Mir

DDIL1 profile image
DDIL1

Reading all the comments I see both sides. I am newly diagnosed January 2022. I have good mental days and not so good mental days. I understand the the need for positivity for all of us, but everyone has different values and health restrictions. I can see how it can inspire and how it can make someone feel like they are missing out on life because they canā€™t travel and are barely managing day to day living and it can make them feel more depressed. I do see what you were trying to inspire and thank you for your positive spirit.

I feel this site is to let everyone feel empowered to share their feelings weather positive or not. We need to be respectful to each other, have compassion, understanding and write thoughtful responses, we know everyone is going through something at different stages.

I value the ladies on here and many have given me great advise and help when needed.

I value everyoneā€™s opinion and do not chastise either Sunshine or Discocat. I value both. In this world it seems we canā€™t let people speak anymore without judgement. So no judgement from me, life is to short. Letā€™s be here for each other and and not slap anyones hand and be thoughtful.

I will usually scroll through comments and not respond If itā€™s something hits me wrong. I hesitated to even respond .

Pbsoup profile image
Pbsoup in reply to DDIL1

Perfect response. Wish I had said it.

SunShineEveryDay profile image
SunShineEveryDay in reply to DDIL1

Gosh this is so beautifully written!! You seriously need to right a book!! Wow šŸ¤©

I canā€™t get over the talent of writers on here!

Your comment is 100% on point and kindly writting and no judgement is great!!!

Tolerating ALL opinions and ALL people! I used to be a lot more outspoken (as the Dutch are) but I have learned to say it in a way that doesnā€™t hurt people. Because that was never my intention and people easily take things the wrong way. So I am much more careful these days. And it feels good! Hahahahaha

Wishing you a wonderful day and hugs šŸ¤—

Miriam

Beryl71 profile image
Beryl71 in reply to DDIL1

Yes I think we all recognise the good and bad days. I try, like 'Sunshine ' to be positive and have all my great plans. Yes there is that bit at the back of my mind that knows that it could all change in seconds with the next scan. I read a lot about people who had survived really bad diagnoses, after my news, and it made me rethink my acceptance of the inevitable. Posts like this give me energy, whilst other posts make me sad and concerned. How much I read will depend on the day! X

DDIL1 profile image
DDIL1 in reply to Beryl71

I totally agree. Everyday we are in a different place. I was so positive 2 weeks ago then someone I knew just passed of MBC, that hit home and it was like a gut punch and my mind went reeling. Iā€™m getting back on track but because Iā€™m finding hope in more meds coming out. We all have to find that thing that can keep us going. I do appreciate the positivity but I do understand everyone is different and unique in our thoughts and physical abilities. We just have to not look into things to deeply if something bothers us recognize we are all different and itā€™s ok find that right post that helps.

KimberlyB40 profile image
KimberlyB40

Thank you so much sharing those amazing vibes! I so needed this! The last several weeks have been so ROUGH! I haven't been in the right place emotionally or mentally. It's been weeks since I've logged in so I decided to take some time to myself and come here for some hope and THIS was my 1st read of the day. THANK YOU!! I'm 42 diagnosed MBC last year and all I've been SO hard on myself. I have limited time left and I haven't done anything. Nothing to change my already crappy life, my crappy relationship, my crappy family, my crappy attitude. I'm just spinning not sure how or what I need to change to stop wasting what little time I may have left.You just put me in a totally different Direction. THIS is why I love this group. THANK YOU FOR THE INSPIRATION!!

Pbsoup profile image
Pbsoup in reply to KimberlyB40

Hi K

Crappy is a wonderful adjective. šŸ’©

I woke up to my dog puking on the floor so I can relate to the scatalogical this morning.

I suppose the not so easy trick is to keep your eyes open for the not so crappy moments and make a point to savor those while they last. (Said dog is sweetly curled up next to me now! ā¤ļø I left the puke where it landed until I had coffeeā€¦low key hoping my other dog will eat it thus saving me from cleaning it up. Husband is on a work trip otherwise I would have pretended I didnā€™t know it was there until he cleaned it upā€”but I digress)

You might like the work of Kate Bowler. She is a Duke professor who is about your age, living with stage four colon cancer that almost killed here right after giving birth to her son and getting tenure as a professor (aka a dream lifeā€”or so she thought)

She writes about just thisā€”how life manages to horrible and wonderful all at onceā€”and that nothing is guaranteed She is not one for toxic positivity. (Donā€™t get her started on when people say ā€œeverything happens for a reasonā€ or that cancer is a ā€œgiftā€.). Because of this she is relatable and uplifting. And warm and funny. She wrote two books (both good) and has a podcast where she interviews a range of well known people about lifeā€™s complexities and has a super Instagram feed (you can search her name for all of this). Sheā€™s a theology professor and a Christian, but not in an in your face way.

Anyway come her to bitch and moan about the crap anytime. Or to share positive momentsā€”weā€™re here for you either way.

P

AutumnLove profile image
AutumnLove in reply to Pbsoup

I Love your comment!ā¤šŸ˜Š It made me laugh and smile( Dog Puke) and I will definitely be getting those 2 books by Kate Bowler you mentioned for my wife and I! Thank youšŸ™šŸ¼šŸ˜Šā¤

Best521 profile image
Best521 in reply to Pbsoup

Coincidently heard about Kate Bowler a few days ago and checked her book ā€œEverything Happens For A Reason And Other Lies Iā€™ve Lovedā€ out of my local library. Had to temporarily put it aside though when my turn came up on the waiting list for ā€œANNAā€ about Anna Wintour. Anna is a force. If she was in charge of Metastatic BC treatments and cures that would be the end of BC. I also heard Kate Bowler is living far beyond expectations due to an experimental treatment she is receiving.

Pbsoup profile image
Pbsoup in reply to Best521

I think youā€™re right about Kate. She talks a bit about those treatments in your book.

And yes to Anna. I am a huge fan. I agree she would be a force to be reckoned with on this issue.

SunShineEveryDay profile image
SunShineEveryDay in reply to KimberlyB40

Hi Kim,

Thank you for THAT! Means a lot to me! :)

I am truly sorry you have been feeling shitty! It IS a shitty disease after all, so nothing wrong with that! Having said that, it is so true that we can CHOOSE to feel miserable and unhappy and discontent all the time and dwell there in that dark rabbit hole OR we can CHOOSE to try and think positive thoughts and give ourselves permission to feel joy in the little small things. Either way, life goes on! Choose which one is more pleasant.

Baby steps! You canā€™t change your life all at once but you can take little actions to make it better. One of the things Iā€™ve always loved about life were opportunities and choice! You with somebody that doesnā€™t love you, disrespects you and hurts you? Get out! I did that and now I have found the love of my life! I wrote it on a big piece of paper as my 1st priority. I made it a full time job to find somebody because I knew I was special and a good person. People thought I was crazy! I kisses a lot of frogs! šŸ¤£ But it sure paid off!

You take massive action, you will get massive results! What are you willing to do to get there and more importantly, why? :)

You want more peace? Go meditate! Itā€™s impossible if you do that right to not feel at peace after. :)

Let me know how it goes!

šŸ¤—

Miriam

TammyCross profile image
TammyCross in reply to SunShineEveryDay

It is not entirely a choice. I happen to be where you are: no symptoms, just side effects, as healthy as I have ever been, and doing my all to enjoy the time I have, trying new things, getting out in the world. I also worry that I haven't accomplished what I hoped to do in my life, something that has meaning for others, as well as myself. I have that luxury. People admire my "courage." I don't see what the choice is for me - I am having a good time and feeling terrific.

That is just luck!

If I were in constant pain and couldn't stand and walk, and even sitting hurts, it would not be so easy. I couldn't do what I am doing that makes me happy. I know that Kokopelli has found things to do that she can do that give her pleasure, enjoyable times, but other times she is just dealing with incapacitating pain.

I think when we post positive things, how well we are doing, we have to remember and say that we are lucky, and acknowledge this state may be temporary. Otherwise it feels like a judgment, a failing, for people who are disabled by their cancer, in pain, struggling; finding those good moments but mostly just doing what they can. Kokopelli was like me a couple of years ago - dancing, getting those endorphins, having pride in her body - then boom, all that was lost. What she is dealing with now is so hard. We have to admire her courage.

I think when we post positively, it is important not only to recognize that not everyone has the capacity to do the things that would give them joy, but also not to be prescriptive. This is what I am doing. It is not necessarily what you should be doing. It is telling people how to live, and the implication that, if you would just do what I do, you would be fine like me, that can feel so bittersweet to those who cannot get there. Telling people that what they say is okay also feels like a judgment. Of course, they can post what they feel. They should not have to get approval or permission.

I can see how helpful your post was to some. That is great! It also prompted those who are struggling with pain or treatment failure to post about what they are coping with and how. That is important to hear, too. I hope, though, there is a way to be encouraging and uplifting for those who are doing well while not making those who are not feel left out? Maybe letting the conversation go on without commenting. Kokopelli has tried to say "enough." Others have more to say. We all need to let this go.

SunShineEveryDay profile image
SunShineEveryDay in reply to TammyCross

Beautifully written and couldnā€™t agree more! :)It was indeed just my story. And again just for those newly diagnosed. :)

Sharon0122 profile image
Sharon0122

What an inspiration! Itā€™s one day at a time! Iā€™m soon to be 71, married to a boring 78 year old man who since my diagnosis a little Iā€™ve a year from now has done nothing for me. No a card, flower, gift, candy nothing but to give advice of itā€™s your life. Itā€™s been a journey I canā€™t believe, not one tear did he shed when I told him.

Now I do what I want, but what I want and I donā€™t care what he thinks. I donā€™t even take him to the doctors or tests.

Keep up your spirits, itā€™s our journey and attitude is everything! Best wishes, Sunshine!!!

Beryl71 profile image
Beryl71 in reply to Sharon0122

That is sad, big hugs to you. I hope you have some kind friends! XX Carolyn

Pbsoup profile image
Pbsoup in reply to Sharon0122

My husband was like that after my stage one diagnosis. He had a ā€œbig jobā€ and was too engrossed in work to be very involved with my health. ā€œI trust the doctorsā€ was his mantraā€”meaning ask them not me. He had to be out a lot in the evenings for work eventsā€”many I was expected at, so I learned to put on lipstick and smile. Some of it was quite fun donā€™t get me wrongā€¦.

But I used to see all the people in the chemo waiting room with friends and family while I was always there alone. It was pretty lonely and did take a toll on our marriage for awhile.

This time around he had some of his own setbacks in intervening years which humbled and humanized him a bit. I wouldnā€™t say heā€™s involved in the day to day of cancerā€”which is fine, but he tries to come to some appointments and asks how I feel. (And cleans up dog mess per my other post). I do wonder what will happen when I am more infirm. But we can worry about that tomorrow.

I just chalk it up to him being male, and English of a certain upbringing and age. the kids and I tease him about being a bit uptight now which keeps him on his toes. šŸ˜…

I know he loves me, and is very concerned but after 30 years of marriage I have to accept he shows it in his own way. šŸ¤·ā€ā™€ļø

SunShineEveryDay profile image
SunShineEveryDay in reply to Sharon0122

Thank you so much! This makes me so sad to hear this. So why stay? Do you feel it still outweighs the benefits? You hear of people falling in love at much older ages and even getting married again! :)

Sharon0122 profile image
Sharon0122 in reply to SunShineEveryDay

Itā€™s a long story and I have no other choice.

mariootsi profile image
mariootsi

Thank you for your positive attitude. I needed to hear this today!!!!!

SunShineEveryDay profile image
SunShineEveryDay in reply to mariootsi

Hello sweetheart! How are you?

I just love you! Always a kind word, always some inspiration, even while going through a rough time yourself! Powerful stuff my friend!

šŸ’‹šŸ’‹

Mir

bubblystream profile image
bubblystream

Beautiful attitude! I absolutely agree! I have been living like that the past 6 years. Plus I know my times are in Jesus hands.

He has been near to me from the beginning.

Bless you Sunshine. šŸ˜Š

SunShineEveryDay profile image
SunShineEveryDay in reply to bubblystream

Beautiful! I need to get closer to god! :)

Shafight profile image
Shafight

Hi Sunshine. Welcome to our group. I appreciate you sharing your positive mindset. I find it inspiring. Iā€™m trying to take every day one at a time and keep focused on whatā€™s good in myLife. My 5 grandchildren bring me so much joy. Iā€™m very fortunate to have family and friends. I know that life is short for everyone (including those without cancer) and I hope to be more active, volunteer again, and travel when Covid threats are less

I still worry when I see the life expectancy stats but I just love reading on this site about peoplesā€™ long survival. You are clearly focusing on the positive of all the treatment available for us. Iā€™m hopeful for all of us.

Please keep loving life and not fearing death. I hope to follow you!

SunShineEveryDay profile image
SunShineEveryDay in reply to Shafight

Thank you for this! I too keep going back and forth between ā€œI will beat thisā€! to ā€œBut what if I donā€™tā€? :)

Survivor60 profile image
Survivor60

I surpassed the 5 this month!! I agree!!!

ntalley8 profile image
ntalley8 in reply to Survivor60

So happy for you and I pray you live even longer! My mom was diagnosed last December after stage 2 in 2001 so a 20 year remission period. Praying she is able to make it 5 years and longer. You keep on keeping on!

SunShineEveryDay profile image
SunShineEveryDay in reply to Survivor60

Woooot woooot!! Hereā€™s to many more!!! ā¤ļøā¤ļø

TwithBC profile image
TwithBC

I agree with so much of what you say, Sunshing -- namely: quality over quantity! Absolutely! Also -- "second chance of life" -- learning how to actually feel gratitude and love. Anyway -- so much of. you say --I say, "yes" !!!

SunShineEveryDay profile image
SunShineEveryDay in reply to TwithBC

Yessssss!!!! šŸ¤£

Mary115 profile image
Mary115

I like these words of yours for me today: "A wake up call to truly start living, take control and design our own life " I find that I am doing that more and more as I lay down non-essentials and spend time as is best for me, which may be different than another, but significant to me.. I too do not want people "To feel sorry or treat me differently". In my case, I need people who are not family or close friends to find their emotional support elsewhere when trying to deal with my and other's cancers. I need my emotional and physical strength for caring for what I want/need to care for, and to also enjoy cancer-free days for myself and with those I love..

Interesting topic..

Helpful. Each of us find our own and often different ways of dealing and yet we can support each other as we do..

Supporting you and all the other responders here.

Hooray Us.

SunShineEveryDay profile image
SunShineEveryDay in reply to Mary115

Hello my sweet friend!

How are you Mary?

Love this! šŸ’•

Yes, I feel a lot of great came out of this post even for the people who didnā€™t like my post! They too were able to get support from other friends on here and talk about their real struggles. And again, it was meant for newly diagnosed women who are still feeling well and who are still mobile. Not trying to sell a trip, but rather saying if you have been wanting to take one, now is the time šŸ˜‚

Of course I would return this ā€œso called giftā€ immediately if I could, but there is some good in it but again, Iā€™m only at the beginning of the road and I am scared of where I will be one day!

Even putting up this post makes me more aware of my own fear again so it is more on my mind again than it was and although Iā€™m not afraid of dying so much as I am afraid of all the suffering that may come my way. For all of us! :(

But if I have managed my Crohnā€™s disease beautifully and for most of my 30 years in remission, maybe this too can be managed for a very long time, but of course the ā€œwhat ifā€ creeps in from time to time.

Much love to you and hugs!

Mir

Mary115 profile image
Mary115 in reply to SunShineEveryDay

Mir, Just as our joy can be real so too can the fear we feel especially when thinking about the days ahead. In fact, seemingly opposite feelings are found in most of us on many days. For thirty years you have lived with Crohn's disease which is a disease where a person can get very tired of the daily grind and worry . I trust your spirit to continue on with this newer meta-cancer challenge in the way that you have done and will do in the future. You have established, for yourself, a well worn path to finding the moments of joy and enthusiasm which work for you.

Each of us here needs to trust our authentic self that we will weather the storms and also enjoy the rainbows the best we can. We can expect no more from ourselves than to be compassionate to our individual selves. This compassion can then extend out to others ..

You may be at the start of your meta-cancer journey but we have all been on our life journey for a while. May we feel and find the comforting reciprocity here and elsewhere to continue on in whatever way fits each individually the best.. Well done all of us here..

Mary

SunShineEveryDay profile image
SunShineEveryDay in reply to Mary115

100% agreed and as usually very inspiring! :)

Yes, you are absolutely right. The post was indeed intended for those newly diagnosed who are still feeling great and not for all the great warriors out there fighting the fā€¦.g terrible disease.

kearnan profile image
kearnan

It is great that you feel like that. But for some of us, financial issues does not allow us to do the things we would like to. At least in my case. I also started out with some type of "enthusiasm" when diagnosed, but then as time goes on and it starts spreading and the meds side effects are difficult to handle, you change from your original "I can beat this" to "I am tired of this." I wish I felt as well as I did for the first three years.

And because I do not look sick, people tend to say Oh you look great, etc. Meanwhile, you know that you are doing worse but you just smile and say thanks. You realize that they cannot see the inside pain, side effects, depression, that comes for some of us and you do not feel like explaining anymore.

I hope this feeling lasts much longer for you bc I do believe keeping one's spirits up is helpful. I am just tired of pretending.

SunShineEveryDay profile image
SunShineEveryDay in reply to kearnan

Good morning! :)

Yes, this post was only intended for newly diagnosed people who are still feeling great and mobile, not for you long time warriors.

You should never have to pretend nor explain! We have NOTHING to proof to anybody!

If I wasnā€™t smiling people would say to me, whatā€™s wrong Miriam, you are not smiling today? Well, I donā€™t always have to friggen smile, do I? And ā€œlooking great Miriamā€! Meanwhile I was battling my Crohnā€™s disease and lost 30 pounds in like one month. Sadly the inside wasnā€™t matching the outside šŸ˜‚

I have struggled with finances for many years now! Single mom of 2 and an ex who went bankrupt after the entertainment business shot down. Heā€™s still on my coach today and finally getting some great traction with a Teen Talent Show here in Kitchener, Ontario. It will be great and he will be back on his feet but it has taken a very long time.

The mind doesnā€™t know the difference, if you tell it lies or the truth! It is easy to go into the dark rabbit hole, so even if you pretend to yourself that itā€™s okay your mind will believe it. You tell yourself something often enough and you will start believing it yourself. Think about something happy and you find yourself smiling, itā€™s pretty hard to feel depressed because you canā€™t do both at the same time!

Enjoy the little things you do today.

Hereā€™s some hugs for you! šŸ¤— šŸ¤—

Mir

Hi Sunshine,Lovely post, your positivity shines through which is great, I'm sure anyone newly diagnosed or just not feeling that they can do this, after all it is a life changing diagnosis! Will hopefully feel encouraged by your words.

My heart did sink though when I looked over replies though, clearly wasn't your intention to inspire any negativity. I'm usually water off a ducks back kind of person, each to their own and all that but I feel deflated when I see this nature of 'feedback' you have received.

I received excellent news yesterday following recent scans from starting a new treatment and I came on here to update with the good news but I'll sit and reflect first on whether I really feel like it, not how I want to feel about this sitešŸ˜”.

Take care x

SunShineEveryDay profile image
SunShineEveryDay in reply to

Goood morning!

Thank you so much for your kind words. It means a lot to me. :)

My heart sank a bit as well but just remember sweety, not everybody will like what you like, and thatā€™s okay! We donā€™t need to be friends with everybody and not everybody needs to like us! In 99% of the time, I find they are merely misunderstandings. And for those few that didnā€™t agree or like it, there so many who it helped! So thatā€™s why I do it! :)

So happy about your scan results! Yaaaaay! šŸ‘

I got mine back recently also stable and even healing of my bones. I will do everything I can to proof my onc wrong!

I just got a message from a nice lady who said she was told she had 6 months to live! She lived for 30 and she just turned 90!! And that is not the norm but rather the exception, but I feel my whole life I AM the exception not the norm and I will do everything in my power to follow in that ladies footsteps. And I heard a lot of similar stories from other ladies so I know it is real!! Thatā€™s exactly what happens when you put your story out there and it gives me hope beyond believe! I firmly believe that love can cure! It has been proven many times! :)

Iā€™m even thinking about creating a course to help certain people overcome certain obstacles they are dealing with in their lives and are quite easily changeable! :)

Much love to you!

Miriam

Best521 profile image
Best521 in reply to SunShineEveryDay

P.S. Loved your comment ā€œI feel my whole life I AM the exception not the normā€. ā¤ļø May I never be normal šŸ¤£

SunShineEveryDay profile image
SunShineEveryDay in reply to Best521

Hahahaha We are ā€œspecialā€ šŸ¤£

Norma1959 profile image
Norma1959 in reply to

Please tell us your excellent news . I have been following you as I have a similar diagnosis . I believe you have started Enherthu ? You are always so positive x

Ntash01 profile image
Ntash01 in reply to

Cazlav- Iā€™ve been reading about your journey since joining this fantastic site in 2020, both you & I have seen ā€˜dramaā€™ prior to now! When I first read sunshineā€™s post - I knew it was going to hit the fanā€¦ and it didnā€™t take long! I chose not to address the comments , instead I just addressed the positives & my own journey.

Yes - weā€™re all MBCers, but our experiences differ & those that can should celebrate feeling good and those that arenā€™t in a good places should equally share their thoughts and feelings so we can be there for each other in equal measures.

Imagine only reading about doom & gloom - Iā€™d be outta here quick smart for sure šŸ˜‚

Whether you chose to share or not- I am so happy that you have had excellent news, stay well Caz šŸ˜‰

N x

Shafight profile image
Shafight in reply to

Hi. Wonderful news. What is your new treatment???

in reply to

So pleased you have good news.

Drsalome profile image
Drsalome

Thank you for sharing your story Thank you for giving the perspective that I too Would benefit from in my life.

Thank you for sharing love

SunShineEveryDay profile image
SunShineEveryDay in reply to Drsalome

Welcome my friend! :)

After all this I feel I need to start a LOVE CLUB!!! šŸ¤£ Seriously! I love love! I feel way too much! I care way too much! I want everybody to be nice! Hahahahaha

Best521 profile image
Best521

Thanks for sharing your joy for life. Carpe Diem! Travel was an important part of my life before Covid and before my Metastatic BC diagnosis. My goal had been to travel around the world. Having the opportunity to meet, work alongside and learn from people of different backgrounds brought much joy to my life. Once I received the dreaded diagnosis last December, I thought the travel door had closed. However, because of you and others on this site who have bravely stepped out into the world under difficult circumstances, I realized, that for now in this moment, travel was still possible. Heading to the Middle East in February. As a fellow metastatic thriver happily shares regularly ā€œYou canā€™t live your life looking out the windowā€. Looking forward to seeing your future posts.

SunShineEveryDay profile image
SunShineEveryDay in reply to Best521

I too thought that traveling would no longer be in my future. Now Iā€™m saving up for a world cruise! šŸ¤£

kokopelli2017 profile image
kokopelli2017

hi all.

I think we have beaten this dead horse to a pulp....lol. meaning I think that this post, and it's many diverse views and comments, has run its course. (my opinion only, of course). in that spirit, I personally am ready to move on to other posts/topics.

the sun is shining. my 'cubs' are coming for a visit later this afternoonšŸ˜Š. life marches on.

perhaps we can all agree to disagreešŸ¤ž. that is the beauty of this forum.

wishing everyone a wonderful weekend.....

sending hugs.

carole šŸ’›šŸŒ·

queeneee profile image
queeneee

Hello Sunshine, I am 2.5 years into MBC diagnosis and have not shared with anyone but my sisters. I found when I was diagnosed with BC 12 years ago that other peoples opinions, suggestions and enquiries were exhausting. Sometimes I feel like saying to people with complaints and small worries.. ffs.. get a grip ! I am clear that keeping my diagnosis to myself conserves my energies for my healing. You will find after you have been on this site for a while that everyone with MBC is different, my onc says they can only say with certainty when they think someone has around 6 months to live. As you say.. concentrate on enjoying every day of your lovely life

SunShineEveryDay profile image
SunShineEveryDay in reply to queeneee

Exactly!! People can complain about things that means absolutely nothing! šŸ¤£

I do sometimes admire the people that are so public and get so much love and support from everybody. That must be nice also.

I just had a comment from someone who was told she had 6 months to live and she has now past 30 and is 90!! Wouwzer!! Love hearing those stories because even though they may not be the norm, they they are real! :)

CTGirl1962 profile image
CTGirl1962

Thatā€™s my ATTITUDE! We all are going to leave this earthā€¦we just know (to some extent) how weā€™re going to leave it. Weā€™re the lucky ones! šŸ’—Everyone else might get hit by a bus!! šŸ˜‚šŸ˜‚šŸ˜‚

Keep on keepinā€™ on!! Every day is a gift!! šŸ’—šŸ™šŸ»

SunShineEveryDay profile image
SunShineEveryDay in reply to CTGirl1962

Hahaha love this! Thatā€™s my girl!! šŸ¤£

PJBinMI profile image
PJBinMI

I sure believe that being an optimist helps QOL (quality of life)! And for me, so does the adorable kitten who keeps running across my keyboard! LOL I have never been given a time frame by my onc, though when I initially pushed, she suggested ten years was not likely. I am at 18 years 5 months and 12 days. (helps that I was given the bc diagnosis on the first of the month) I've attended several BC and MBC conferences and learned as much as I can There was a twenty year survivor at the first one and that was hugely hope giving! I've met some wonderful women and formed great new friendships, probably the best "side effect" of having this lousy cancer. I was 57 when diagnosed and had been remarried for just two years. Since then my daughter has gotten married to a man who is just right for her, and I've had 3 step-grandchildren added to my family. I've taken several trips, including a wonderful Alaska cruise. I've visited museums, major art galleries, and lobbied Congress for more and better BC funding. I've seen my younger, of two, step daughter get her MSW and follow my father and me into working in mental health. (I'm so proud of her, and delighted that two of our 3 kids have careers that won't make them rich but add to the well being of others!) I know how fortunate I am to have a cancer that has been relatively easy to contain, great family and friends, as well as fantastic medical insurance. I've certainly had moments of being scared, overwhelmed, fatigued, angry and my memory is far from what it was (cancer or aging? combo probably!) I don't want to die while our nation, and much of the world, is so divided! I'd love to see better cancer treatment, even cures! I haven't become part of this on line community to find help with cancer related issues, but more to be part of something larger than I am, larger than cancer, and the occasional great laugh!

SunShineEveryDay profile image
SunShineEveryDay in reply to PJBinMI

Wholy crap! This is what Iā€™m talking about! 18 years at stage 4? How very encouraging and I love your story and your life! :)

PJBinMI profile image
PJBinMI in reply to SunShineEveryDay

Yep, 18 + years of knowing I have MBC, in treatment, and now 76 rather than 57 years old! My onc thought the cancer had probably been there for at least 3-4 years before diagnosis. I just think of that as a gift of those years of "normal" living." I have lobular bc, which often does not show up on mammograms and it sure hasn't for me.001

Best521 profile image
Best521

Joy is our most precious asset.

SunShineEveryDay profile image
SunShineEveryDay in reply to Best521

I named my daughter Joy. :)

Rosiero profile image
Rosiero

Here here - I am too of the same diagnosis but feel its a gift. Thank you for putting it into words. x

golfing21 profile image
golfing21

Hi sure let's go on a retreat- let me know how the planning goes. I am also Canadian.

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