Thanks from newly diagnosed

MSL

Dear all

I am very newly diagnosed Stage 1V, de novo, lung nodules. Just 4 weeks ago I was blissfully ignorant that I had a lump in my breast, let alone an incurable illness. I've had absolutely no symptoms and feel completely well (aside from the scars I bear now from 2 surgeries!).

As many of you have noted, no one can possibly understand the breadth and depth of the emotions that follow such a diagnosis unless you've walked in these shoes. The fear, the disbelief, the shock, the smell of hospitals, the bedside manner of strangers, the loss of control, the loss of the future, the interminable tests, appointments and scary scanning machines. To name but a few.

So I firstly wanted to say thanks to you all. I know, from your posts, that many of you read and read this site when you were first diagnosed. Looking for hope. And information. That's certainly been me. And I thank you for your honesty, your compassion and your desire, driven from your own personal experiences, to assist people like me make sense of this most unexpected and most unwelcome turn of events in our lives.

In that spirit, I thought I would share with others some of what I have gleaned from the thoughts and ideas on this site, and my own reflections, that are helping me begin to develop strategies for dealing with this day to day.

At the outset, I make the point that it is clear everyone confronting this beast is fighting it as hard as they can. Some people obviously have better physiological responses to treatments than others. It's also clear that strategies and expectations inevitably change as the time with this illness marches on. And it has been a privilege to witness the strength, courage and honesty with which people in this community are approaching the latter part of this journey whenever it may hit.

These are just the thoughts of a person at the beginning. So.

I have done lists of my own characteristics and traits that I believe will help me in this fight (I've got a beautiful family, I'm tough, I work hard, I've got a good sense of humour, I'm fit) and those that I believe will be unhelpful (I get very anxious, I'm prone to jealously, I'm frightened of tests and hospitals etc). I'm trying to nourish the good traits and identify and isolate the bad ones (easier said than done with this crap sandwich of a diagnosis!)

I've done lists of my fears (leaving my children, experiencing pain and hideous procedures, never working again, watching everyone else getting on with and enjoying their lives etc) and my hopes (I'll live well for many years, I'll stay active and productive, I will have many moments and stretches of happiness etc). When the fear grips I try to offset it with things I've identified on the hope list.

I've done the list of what I'm grateful for, and try to write the 5 things I'm most grateful for each day at the end of the day. This helps keep my heart open and loving rather than closed and bitter. (Easier said than done of course!)

I've set the list of what I want to do - be here for my family; be productive and fit; be living in the moment; have fun, travel with my kids; write, read, think, pray, reflect; letting anger and resentment go; letting jealously go (very hard on given this diagnosis); being grateful.

This all added up to a list - ever evolving - of how to approach the darkness when it hits. And as we know it hits often and with ferocity. Here's my first cut:

Get up and about (if you are able)

Don't think about what ifs and what could have been. Ever.

Don't let yourself go down the path of jealously and resentment, this poisons your soul.

Do exercise (if able) and eat well

Understand that you are spending such quality time with the kids not because you are going to die tomorrow but because that is what makes you the most happy.

Embrace the insight and understanding that this awful diagnosis gives you about what is important in life.

See your medical appointments/procedures as just part of your daily/weekly routine. You will be spending much more time at home and with your family over the life of this road than you will in hospital;

You will have many moments of happiness in any given day. Cherish those. And remember you had plenty of unhappy moments before this diagnosis;

Be hopeful, many women live for many, many years and new treatments are coming on line all the time;

The stats are old, old, old!!;

Mission statement - I don't want to spend my days feeling distressed, frightened, resentful and bereft. I want to feel secure, peace, love, engaged and hopeful.

Anyway, it's all waaaay easier said than done and I'm on a runaway train of emotion, but it's a start. Be terrific to hear your words of wisdom.

Thanks again all. You've been my raft in these hideous rapids. Look forward to building exceptional friendships in the face of the extraordinary blow we've all been dealt.

50sgirl

MSL, Welcome to our discussion boards. I am sorry that you have reason to join us. As you have already discovered, there are many wonderful people here ready to support and help you. They have helped me through some dark times and educated me as only fellow mbc'ers can do. I must say that you have come a long way is just four weeks. You have done your homework, formulated a plan, and found a way to get on with life. Those are amazing accomplishments. I have no advice for you right now except to keep looking forward and appreciating all the big and little things in life. I look forward to reading more of your posts in the future.

Lynn

Kandy

I truly welcome you to this group of elite women, so sorry you had to join us. I agree, you have came a long way in a short amount of time. There's always ups and downs, that's called life. I hope your positive attitude continues and glides you through life. Best wishes to you. Enjoy the moment.

Moderators

MSL-

Welcome to BCO, and thank you so much for sharing with us. We hope you find these boards to be a source of support and love.

The Mods

ElaineTherese

There's a wonderful thread entitled "Tips for Fighting the Dark Clouds." (You can search for it using the Search function.) When my uncle was diagnosed with pancreatic cancer, I read that thread and summarized some of the tips for him:

• Ask yourself: Am I OK right now? Chances are that you are OK right now. You might be in pain, you might feel sick, but you're alive. And if you're alive, you're OK.
• Change "but" to "and." I love to do photography but I have cancer, versus I love to do photography and I have cancer. In the "and" sentence, the two can coexist and are not mutually exclusive. So change your "buts" to "ands."
• Practice mindfulness. Take joy from the moment. "Yesterday is history, tomorrow is a mystery, but today is a gift. That is why we call it the present."
• Ask yourself: why would I let something that I don't like rule my life? It's part of who you are, not all of who you are. Why give it any more power than you have to?
• Just live each day with peace in your heart, knowing it is what it is, and NO amount of worry will change anything. "Worry does not empty tomorrow of its sorrow. It empties today of its strength." – Corrie Ten Boom
• There's no shame in asking for medications that you might never have asked for otherwise. Anti-depressants, anti-anxiety medications, pain medications, prescription sleeping pills – all of these drugs can improve quality of life. After all, "Better living through chemistry."
• Woody Allen famously said that 80% of life was just showing up. Well, 80% of fighting cancer is just showing up for all those doctor's appointments and treatments. It's as simple as that.

Best wishes and ((hugs))!

Lynnwood1960

MSL, welcome to our group! I always tell newcomers that they will learn more here then from any doctor! Lots of tips and support always available. I think the beginning is especially hard, the shock of diagnosis and all of the decisions that must be made when your mind is swimming. Soon you will find your "new normal" .

MSL

Thank you all for making me feel welcome x

pajim

MSL, welcome! So sorry you have to be here. It looks like you are rising out of the black hole very well. As you note, we've all been there. Life WILL get better, promise.

Once you know your treatment, there's a thread for it and for you.

ShetlandPony

MSL, I think you are right to address the mental part of this game, and pay attention to your spirit and your mental health. I love the idea of the lists. Thank you for sharing this idea and for sharing your lists. Have you shared them with your loved ones or a counselor as well? As far as fear of medical stuff, that was me, too. I found that the kindness of the medical people turned what could be trauma into being cared for. I'm going to bump the fighting dark clouds thread.

MSL

Thanks ShetlandPony! Read the fighting the dark clouds thread and I too will head out for a walk.

Have shared the lists with DH. Haven't spoken to an external person at this stage. Do you? Is it helpful

DivineMrsM

MSL, hello. One thing that makes women dealing with stage iv bc feel better is knowing we can help others thru our own experiences. I remember especially at the beginning, I was so grateful to know others in the same boat as me who were still going about their lives. I found them tremedously supportive and it helped with my intense fear. Thanks for the nice post. Sorry to learn of your diagnosis. Wishing you well as you navigate these new waters.

ShetlandPony

Yes, MSL, I found a therapist (psychologist) who has a lot of experience working with cancer patients and is just really good at what she does. She helped me understand my grief at the beginning and come through it to a more neutral place. Grief is temporary and people get beyond it. She helped me to have more hope even while acknowledging my situation. Plan but don't predict. That day may come, but it's not today. Mindfulness. I see her every so often. I can talk about anything without feeling the need to protect her. She always sends me away with something helpful. You are way ahead already because you have a lot of insight, and you talk to your DH. I had to get past the desire to protect my DH. As the social workers told our support group, talking about it builds intimacy. Like Divine, I found that meeting stage iv people who are living their lives in spite of cancer helped calm the panic. Something I like about an online group is I can find people interested in talking about subjects that are on my mind, and I can avoid subjects that are not helpful. The most important thing to me is being able to offer and receive friendship and understanding here. As others have said, I'm glad you are here with us, though sorry any of us have to be here.

susan3

MSL, everything you said was beautiful and encouraging. You have put a lot of good, moving forward, live for the moment time and energy in what you stated. I am 15 years total, 5 years stage IV. Life is still beautiful :

MSL

Thanks all

I don't know about other people's experiences but I've found time sort of slows down when you get this diagnosis. Almost like you're a little kid who finds the flowers and ladybugs fascinating and for whom summer holidays last forever.

I guess it's your mind coming to grips with the massive change to previous assumptions about your longevity.

Ultimately I believe it's helpful and means you're able to live in the moment, find joy in many things, take great comfort in all the living/loving one can do in a day, let alone a year. (Some of the best times I've ever had with my kids have happened these last few weeks because I'm completely present in the moment and so grateful for being with them)

But I'm also finding it a bitter jolt when you interact with the "outside" world and everyone else is operating (quite rightly and good luck to them) on the normal timeframes, the normal years unfolding ahead, the normal planning for the future etc. etc. Its a tough reminder (and often one that hits you without warning) of all that's been ripped away from you.

I really want to get better at dragging myself out of that rabbit hole and back into the sense of wellbeing and hope that comes when you are able to live in the present and look forward to all the beauty of tomorrow, or next week, next month or next year, rather than the luxury we used to have (without fully appreciating it) of planning for the next decades.

I don't have any answers, but I guess part of finding them (if there are any) is articulating the question/issue.

Any thoughts/advice is most welcome!!!

DivineMrsM

MSL, its been almost six years I have been dealing with stage iv bc. You are so newly diagnosed! I remember dealing with those people who seemed to operate on a different time frame. I remember that bothering me so much, too! And people putting things off! I wanted to yell, have those adventures now! Yes, we have been tossed into a different trajectory in that regards. I know several family members went on and on about retiring in eight or ten years and I would think, gee, I do not know if I will see that for myself. It did not seem to register to them what I was dealing with.

I learned to steer clear of those conversations. I also did more new activities so the conversations were about new things and not as much about the former ways of thinking. So it kind of evolves. I sort of grew a callous over my feelings when people talked in the "normal" time frame way and it bothers me less.

I want to be honest about something else you said. The diagnosis robbed me of my sense of well being and I have never got that back. (Perhaps you will. ) Altho I never got that back, I have had some of the best moments of my life after the dx, not because of bc but in site of it. More living in the moment, and that is good. Not putting things off is good, too. You are right in that this is a process of finding how to cope, to deal with our new normal. The search moves us forward and that is not a bad thing. I also learned to dig deep down inside of me to find if I had what it takes to deal with this, and if I couldn't find it, I had to create it.

pajim

I heard a talk at one of the MBC conferences that really resonated with me.

A gentleman was talking about grief and coping. In particular why if affects different people differently. He said that we all have a view of what our future looks like. . .work, kids, grandkids, you name it. When we get a diagnosis like metastatic breast cancer, that entire future-vision disappears in an instant. It takes time to build a new vision of the future.

The same thing happens to people whose spouses die unexpectedly, have a house burn down, etc.

DivineMrsM

pajim, that is such a good explanation. Thanks for sharing it

ShetlandPony

When I look ahead in my mind, I see only darkness where I used to see a future. It's very sad. I know most people see a future, but I forget that and it almost startles me to hear them talk about it. It makes me feel like an alien. The best I can do is tell myself that there may be a future for me that I can't see, and then fall back on making the present as good as I can. I find an odd comfort in thinking of my people centuries ago, who lived with death as a close neighbor, when life was harder and modern medical care unavailable. They could not take a future for granted either.

MSL

I think that's a good description ShetlandPony, feeing like an alien. I read another one in these boards (I think it was you too) along the lines of feeling like you're performing in a play to the outside world with your real life hidden and scary.

Like most people, I enjoyed planning, thinking about things ahead, imagining where I'd be in this timeframe or that. I think pajim is right, we need to build a new concept of the future, not one we ever contemplated but one that will assist us live the best we can with where we find ourselves. The "new normal" that everyone keeps referring to!

It's fascinating what you said about wellbeing DivineMrsM. You have great honesty and insight and that helps many people on these boards. I always love reading your words, despite the darkness of our situations you seem to shine often, and I take great inspiration from that.

In spite of being prone to stress and anxiety, my basic disposition during my life has been pretty upbeat and happy. Most days I woke up feeling good about the world (even if certain things were bothering me etc). Interestingly, I've found the mornings the hardest time of the day with this diagnosis. Waking up to the new reality and feeling depressed/distressed which then can cripple the whole day. I'm really determined to crack that (long way to go!!) This is where exercise or activities will be important, I think. Get up and about, remind yourself of what you're grateful for, and embrace the day. (So easier said than done......!!!!)

I've also found it helpful when trying to get that awful monkey off your back telling you you can't enjoy this or that because you've been given a death sentence etc etc to absolutely not put timeframes on my life (I know many of you do that as well). Hopefully I live for "many" years which would mean I'll have many experiences again and again etc. And who knows where that might take me?

Anyway, writing these things down does assist me create some order in my internal chaos. I appreciate so much you sharing your reflections, ideas and experiences, it is immeasurably helpful.

ShetlandPony

Sometimes there is a feeling like I am the only person performing in a play that knows it is a play, and the other characters think the play is reality. They can ignore mortality, even though mortality is part of the reality of being human. Being stage iv in a world of "normal" people can be lonely. Our outlook is different, and we have strange experiences like ports and scanning machines. It's our new weird.

Mornings, yes, when I'm smart I go outside for a dose of nature and daylight. Add exercise, even better. I read that our levels of the stress hormone cortisol peak in the morning. Sometimes I wake up feeling a physical fear and have to breathe through it.

Pajim, can you elaborate on building a new vision of the future? Divine, your point about having new experiences is not part of the usual advice, and I find it intriguing. I'm trying to keep it in mind and look for new experiences. MSL, you are eloquent. It helps us all to know others can relate.

Now, it is a beautiful day. I finished reading my book, I walked with hubby, and someone who loves us is going to cook and serve us a great dinner this evening!

MSL

Very well put about mortality ShetlandPony. As you say, we are now unable to cloak ourselves in the comfort that most others enjoy - namely that death is a distant, unknown quantity that does not need to be contemplated on a regular basis.

Having said that, and as you point out, we have also been given an extraordinary (albeit unwelcome) understanding of the genuine human condition. It changes us - as Divine said some of the best moments of our lives are happening post this diagnosis because we are able to appreciate in the very depth of our souls the exquisite beauty of life and the immense power and joy of the love we feel for those closest to us.

Given I can't turn the wheel of history and alter my diagnosis, I would like to choose to be grateful for this insight and to explore more of it, which is why I find conversations like this so important. I hope we can continue to tease these issues out and share our reflections.

Anyway, lovely last para SP - there's 4 out of 5 things to be extremely grateful for today right there! Perfect.

Here's mine - I drove my eldest to school and we listened (and sang along) to her favourite tunes; I had a 2 hour walk; I had a glass of champagne with my husband; I snuggled with my little boy; I continued my teen wolf marathon with my middle kid (good ol' Tyler Posey!!).

😘 to you all xx

DivineMrsM

New experiences help shift your focus. Some of my new experiences have been traveling, getting to those places I have always wanted to see. A weekend trip to NYC meant figuring out how dh and I would get there, where we'd stay, when we would go, what we would do there. The prep took my mind off bc even if only in temporary spurts. While visiting, we had to figure out how navigate around. We took in the sites, ate in new restaurants. Saw a few odd people and were helped by some really nice people. My energy and focus was poured into the trip. I had to be thinking of my next step or we would get lost or miss our connection. It helped me stay in the moment.

Since then we have been to Grand Canyon, Nashville, Bahamas and more these past several years. There are day trips much closer to home that are interesting, too. Tour of a former state penitentiary, a park in the spring when thousands of its tulips in are bloom, a restored train depot

New experiences do not mean only travel. I recently became interested in coin collecting and am learning new things about them. When I was first diagnosed, my husband had just got an ipad and I had great fun seeing how it worked and playing games on it. I have tried new recipes and ate new foods. Got a pedicure for the first time. Took a segway tour with my son. Held an alligator. Snorkeled. Shopped in Trader Joes for the first time. I was also introduced to walking labyrinths. I continue to seek out new things to do or try.

I am still aware of bc daily. It does not go away. I address the issues I need to concerning bc, but do my best to contain the thoughts about it so they do not consume me.

MSL

Well said Divine - getting to a point where thoughts about bc do not consume you is what I'm aiming for! Your strategies and suggestions are great.

I've read on many different posts quotes along the lines of "worry/fear of tomorrow changes nothing and only serves to rob you of enjoying today". I think that's a very powerful message.

Here's to enjoying our todays xx

pajim

I'm trying to recall more of what that gentleman said. It was a talk at the UNC MBCN Conference three(?) years ago, so it may be possible to find the slides. It was all about building a vision of the future as a coping mechanism.

My current vision of my future is 1-2 years in length . When I first joined these boards women talked about planning no more than 3 months ahead. I did that for a bit, but then realized I am not going to die any time soon. I am ER+ and still taking hormonals. I decided I would worry about dying when I needed chemo. Nowadays I plan a year out. I'm figuring out what I am doing at this time next year (Copenhagen for work, actually). I made a bucket list and have been crossing things off.

Doing this makes me feel like I live a[n almost] normal life. Never let it be said that denial isn't an option. I've gone through my first progression so I'm not really in denial any longer, but as I like to say, I've got work to do. (I still work full-time -- it keeps me out of trouble) I'm too busy to worry about this disease, except in the shower and as I try to get to sleep. Most days that attitude works for me.