Tips for fighting the dark clouds
Comments
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Terre, Of course we're taking Clyde!! The road to Victoria is glorious, twists & turns through the mountain passes! Makes the trip worthwhile, unless of course someone does something stupid & then we'll be stuck! Thanks for the good thoughts, I appreciate all the help I can get. Cheers, Dee
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terre-I love this! I have been using most of the suggestions you made to stay positive to stay in the here and now and I also use exercise-it's my time to focus on me and though I'm no skinny minny it makes me feel like my body is still MY body and not the cancers. I also have to credit my husband and children who have never treated me like I am "sick" and have just expected their mom to be the same mom they've known. If I start feeling down or sorry for myself they immediately throw my own words back at me "put some ice on it" which has been my go to when any of my kids had one of their many cuts and scrapes. I wanted them to know that though they were hurt it wasn't as bad as they thought. I also have a mantra I repeat to myself throughout the day " I am happy,I am healthy,I am healing." It really does help bring me back to what's important-being here in this moment with the people I care about.
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Terre, Xavo, and GG27 thank you. I had a meltdown last night but feel better now! I am not working and am on disability. My husband reminded me I've always wanted to have summers off with my kids and to just enjoy this time. Live in the moment that's all we can do!
Missy
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This thread is a very good idea. I was told at the weekend that a friend of a friend was rushed to hospital with a broken bone, and then was given the much worse news that she had Stage IV breast cancer. I at least had cancer back in 2010 so when it came back it wasn't a total shock, but I can only imagine what this woman is going through. I have asked my friends to let her wait until her oncologist has started her on a treatment plan, and then give her this website's address with the advice to search out this thread as well as the one "Life does not end with a Stage IV diagnosis".
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Terre, Xavo, and GG27 thank you. I had a meltdown last night but feel better now! I am not working and am on disability. My husband reminded me I've always wanted to have summers off with my kids and to just enjoy this time. Live in the moment that's all we can do!
Missy
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Love the car! Dee, I was in Victoria, briefly, on my Alaska cruise. It really seemed like a lovely city and both my dd and I wished we'd had more time there. The Empress Hotel wa impressive, though a bit spooky looking. Seems like there should be some interesting ghosts floating about. It's easy to see why tourists love Victoria.
Keeping busy, no matter how mundane the task/activity is, is really important for me. For example, I keep my mending things in a zippered, clear plastic case. Over the years, it has become a mess of pins, needles, threads and buttons. I could still find what I needed, but it was not pretty. One morning, I had three blouses that needed minor mending. I looked at the bag and decided it was time to organize. It took me about an hour to go through everything but when it was done , I felt satisfied. Not life changing nor of any great value to mankind, but it kept my focus on something other than bc. Don't laugh 😉
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Dee, my brother lives in Ladysmith. It's beautiful there. When my nieces were younger they would warn me about going into the woods and being eaten by mountain lions. ha ha When I need a pick me up, I go to this website and read the stories. You can search for breast cancer or any cancer. I search for stage iv cancer stories.
Actually, I've read every story. XO http://www.radicalremission.com/index.php0 -
Missy, is it possible for you go to a really reputable cancer center for a second opinion? Specifically, is it possible for you to go to Dana Farber for a second opinion? My knowledge is very limited, but I know there is a DR. Daniel Silver at Dana Farber breast caner department who is especially specialized in TN subtype studies and treatments. Just in case some gifted doctors came up with good ideas. Hope you have a nice day.
Terre, I admire your skills of photography. I always wish I could be that good, particularly when nature moved me so profoundly. Tried to learn. But I am very slow and thick at understanding all the photography terminology. I gave it up long time ago and remained a hopeless snapper.
Dee, love your Clyde. I love sport cars. But my husband hates them, simply because they are small and he is tall and resents to stuff himself in a small space. I managed to get a second hand Isuzu Impose when I taught in PA. Oh, I loved that Impose! It's like I was lying in the seat and the car was flying. The Impose now belongs to one of my old beautiful dreams. Gone, the Impose gone.
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Good morning!
Missy, good on your DH for reminding you of what's important, spending the summer with your kids! It's sometimes hard to look for the positives when you're not feeling well.
Caryn, The Empress is a great place, I think there is at least one ghost that roams the hallways, which guests have seen, but I think she's harmless. And their curry buffet in the Bengal Lounge is so yummy.
Txmom, Ladysmith is lovely & they do have lots of cougars around there. Luckily on our little island we rarely get them, but it does happen when they swim across.
All you other ladies on this thread, I hope you have a lovely, cloudfree day. I'm making muffins for the trip tomorrow & I'm surprising DH with homemade lemon cream fettuccine, mmmmm! Cheers, Dee
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Thanks Terre... I needed to see these today! Still new to this diagnosis and almost 2 months into treatment.... I am still processing and all of this having been misdiagnosed a year and half ago and then being Stage IV from the beginning...My significant other had begun our plans for starting a family and marriage..and then motherhood got snatched from me. Some days I am good... Laughing and joking, but there isn't a full minute that I am not reminded by this horrible disease. I am praying I get to the point soon that I can accept this for what it is and I realize that It will be and there is nothing I can do about it. Again thanks ladies... I know that I really have to start living life and putting this diagnosis to a secondary or tertiary focus.
Monika
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Xavo, I am a patient of Massimo Christofanilli who is one of the best for IBC. Unfortunately he is leaving Philly for Chicago. : ( I think the IBC is their biggest concern but if needed, I will have to seek out TN specialists. Thanks for the info! Miss
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Hi Monika - so sorry to hear about your diagnosis. What a shock! And it does take time to figure out the "new normal". And to mourn the loss of what you pictured your life to be like. Be gentle with yourself and give yourself time. I'm glad you found this thread and have joined us and hope that some of the ideas may help a bit. Sending you big hugs.
Dee - I would love to see a cougar, especially swimming across! That would be amazing. I lived in cougar/mountain lion country most of my life and never saw one in the wild.
Partyoffive - love the "put some ice on it". What a great idea! And really funny. Definitely would help to blow dark clouds away.
Fridaygirl - so sorry to hear about your friend! I had Stage I with a supposed <7% chance of recurrence, and mine was found on an x-ray when I fractured my femur. So, went from "sore leg" to in the hospital for emergency surgery and by the way you have cancer in like an hour. That was bad enough, but at least I knew recurrence was a possibility. Sending her good thoughts. And you're so right - once you have a plan, it does help a bit. And I'm so glad you've joined us!
Thanks for the link txmom! Love it!
Well, back to work.....
Hugs to all,
Terre
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I have posted this on other threads, but decided it probably bears repeating. I'm sure those who have seen it before will skip it!
After I was dx with Stage IV and back at work, I called a coworker about some work. She had just been to her mother in law's funeral. I said I was sorry for their loss. She said, "Don't be. She finally got what she wanted!" I was a bit surprised, but she went on to explain. Her MIL had been dx with cancer (not sure what kind) 10 years prior. She decided she was dying. She refused to visit the grandchildren (a 70 minute flight away), plan anything for holidays, and really to do much of everything. Why? Because she was dying and her health could fail at any moment. She spent 10 years missing out on family gatherings, watching her grandchildren grow up, doing things she loved, because she was dying. I'm not 100% sure, but I think she actually died of a stroke or heart attack, not cancer. At any rate, it was an ah ha moment for me - I can spend the rest of my time preparing to die, or focusing on living.
My sister-in-law's partner's mother has lung cancer. She never smoked. She was dx about 3 years ago, and the prognosis was bleak at best. However, she decided to just go for it. She's in her late 70s and has numerous other health issues, some of which are quite painful. She did research, got into a clinical trial run out of the US, and the medicine worked pretty well! She's spent her time travelling, enjoying life, catching up with family, and remaining quite upbeat. Her daughter thinks she's in denial, but so what if she is? She's failing and we're not sure she'll be here next year. But given that they thought she had six months at the most, has made advances for science, and stayed reasonably happy, I reckon denial might be a good thing! Obviously, she's not in denial to the point that she refuses treatment - she embraces it. And stays focused on living, instead of spending her time dying.
At any rate, both of these things have helped me from time to time. I remind myself of the choices I have, and hope I make the right ones.
Hugs to all,
Terre
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Terre, love the sentence about spending your time preparing to die or focusing on living! I will make that my mantra when I get overwhelmed.
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What a wonderful topic. And I see some of my favorite sisters have already posted helpful ideas. I'm so grateful to all of you who reach out to share happiness.
I noticed a few ladies have said that they (or someone they knew with Stage IV) had been dubbed "Pollyanna," "unrealistic" or etc. So effing what? If any of us wants to focus on living, rather than wearing sackcloth and ashes, why is that something to criticize? Even if that includes choosing to forgo debilitating treatment that might not work anyway, in favor of gentler treatment that provides a greater quality of life.
Like many of you ladies, I am often complimented on my positive outlook, despite my disease. I am weak, timid and in pain, and struggle with negative thoughts, but I see what this monster cancer has done to people I love, and I REFUSE to let cancer steal my joy. Yes, cancer may win a battle or two, but it's MY life, not cancer's.
Having friends who inspire makes a difference. I met a friend of mine with Stage IV for lunch one day. She has lost most of her teeth to chemo, yet still dazzles with her smile. She ordered ice cream and pie for dessert, ate it before her meal, gleefully. When I told her she seemed so full of life, she said, "Death isn't in my vocabulary." 😃
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Tarheel, what a beautiful post. You continue to inspire me. I love your friend's comment "death isn't in my vocabulary".
Kiwi, I well remember 'entering' the stage iv section of this forum, scared you-know-what-less. In all honesty, I had no idea HOW I was supposed to receive this news. What was I supposed to be doing now that I was diagnosed? My mind was totally at a loss. I pictured it like I was in a free fall with a cartoon bubble above my head filled with those dark scribbles: #&*!%*@#?/+&!?! It was through reading how others here continued on, having birthday parties for their kids, traveling, buying new clothes, ect., that I was able to move forward myself. I know I had to spend some time digging deep down inside myself to find either something I already had that would help me cope, or find a way to develop that ability; being in communication with others going thru the same thing has been a huge benefit. So another way I get thru the dark clouds is coming to this forum to find the support I need.
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Another visual I have learned is to picture putting the cancer issue in a small box, no bigger than a shoe box, then I see myself standing on it. That way I envision it as contained, and not flailing all over the place. And I am on top of it, it is not controlling me. Some people call this compartmentalizing, I think. When I need to address it by going to doctor appointments, paying medical bills, finding help for side effects, ect., I get it out but put it back in its place.
I do not consider the act of going about living life, both the big and small moments, as being in denial. To me, denial would be knowing you have a serious medical problem and not seeking help for it. For example, if you had a large lump in the breast but never went to the doctor, you would be in denial that there is a problem; or, loosing your job and friends because of drinking, but claiming you're not an alcoholic; or, having bill collectors continually hounding you while you gamble yet another paycheck away claiming you can quit at any time, ect. Not confronting the issue is denial. We are confronting stage iv, admit it's there, seek treatment, seek support. It colors our lives, yet we try to not to let it consume us.
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Terre,
Great stories! It never occurred to me to prepare for dying, so focus on living I did and intend to do until I can't. This is not denial at all, IMO 😀
Tarheel,
Good to hear from you! I too, refuse to let cancer steal my joy. In homage to your friend, I think I will eat some pie today. Take care.
Caryn
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LOVE the box analogy!!!
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Tarheel - welcome and thanks for the beautiful post.
Mrs M - your'e so right! It took me about 3 or 4 months to come to the boards. I'd been here during Stage I and was terrified of what I'd see here for Stage IV, but it turned out to be fantastic support. Love the box analogy!
Gotta get to work...
Sending hugs,
Terre
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When my dad was 70 he needed heart surgery. I remember the surgeon saying "I did what I could, but don't get your hopes up, I probably only gave you two more years at the most." When dad got home he said " I'm not going to talk about dying. We're just going to forget she said that." His life went on as normal and he wouldn't even discuss his funeral or burial preferences. He said, "I've made a lot of decisions for my family. When the time comes you have to make that decision for me."
Dad followed dr's orders and did all he could to remain healthy. He had to be on a bunch of meds that did some damage to his kidneys. He eventually needed a pacemaker, but he had good QOL for 13 years till he died from a problem unrelated to his heart. He never lived like he was waiting to die, till his last week when his organs were shutting down and death was imminent.
Even then he was amazing. He started telling the story his life, in chronological order from his childhood. He was a wonderful story teller, captured everyones attention. It took a week to tell his whole story. He'd fall asleep in between, then wake up and pick up where he left off. When his stories reached the present he started to talk about seeing his mother, she was waiting for him. That night he went to sleep and passed on quietly.
I'm not stage IV, at least that I know, but of course we all understand the fear of recurrance and dying. Cancer gives us all dark days, no matter what stage we are. During these times I remember the example my dad set and try to be as brave & positive as him. I tell myself that my children are now watching me and how I handle this will influence them.
This thread is inspirational.Thanks to everyone for sharing your thoughts and stories.
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yesterday was a dark cloud day for me for a variety of reasons. I came onto the boards last night looking for a place to vent. Instead I found this thread, which reminded me that I can just go take some Xanax and feel better, which I did instead.
😜 stefanie.
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Debiann, I enjoyed your story about your father. I hope that someday my children will have warm memories like that about me. In the meantime, I am enjoying every day I have, and I rememberthat today I am living, not dying.
Lynne
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Thanks Lynne, I'm sure you are making wonderful memories with your family everyday!
I've noticed lately that when I have a fun day with my husband, kids or grandkids, I end the day by saying to myself, "what a great memory". Its statisfying to acknowledge and appreciate the good times. I'm trying VERY hard to live in the moment, and not always be thinking about things I have to do at work, or chores that need to be done at home. I guess this is called mindfullness? Whatever it is, I need to get better at it.
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Debiann, thanks for telling the story of your father.
Thanks for all the posts here. Enjoying reading them all!
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I think that a thread like this is important because it shows us the continuity of everything. When I was first diagnosed with mets in 2013 I assumed I would be dead very quickly. I started to search the internet to try and find instances of Stage IV cancer which were cured, a ridiculous task. I then found this website and saw that there were women who had been diagnosed with mets many years earlier and who were still around, living a good life and having all the fun anyone would ever want.
I worry that part of the problem is caused by people who are Stage IV keeping it to themselves. I realize that in many cases it is difficult to accept the situation or to talk about it, but I do wish that in general society was more aware of how many people have this diagnosis. All too often the first we hear about someone having cancer is when they have suddenly moved into hospice care. We never knew that they were living, strong and active, for quite some time before cancer got the upper hand. As a result, there is an urban myth that people get cancer and die very quickly when in fact they will more often than not live well for many years.
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Bravo FridayGirl!! I agree....I am so glad to have these discussion boards to refer to and chat with others that are going through the same thing. I too had searched the internet for information only to find nothing but gloom and doom! That is not necessarily the case...with today's technology and medicine anything is possible. The stories and information shared on these discussion boards has given me so much hope! The boards have also helped me get through those dark cloudy days!
So many times when someone finds out that I am stage IV Breast Cancer they are so sorry for me, I see the pitty face. Then when I explain that there are people that have Stage IV that are leading perfectly normal lives for many, many years they are amazed. They had no idea that could happen.
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I agree! I don't tell a lot of people that I have MBC because, firstly they don't know what that is & secondly, I don't want that gawd awful "pity face"
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I spent the first couple of years after my dx only telling people if I chose to. I wasn't trying to hide it, but I wasn't in the mood to explain it. I don't fault people for not understanding all the complexities of bc in general and MBC in particular. If it hasn't touched their lives, how would they know? I sure didn't know about bc and there are countless other diseases I know nothing about. Gradually, I began to say I was stage IV. I mentioned it on FB. Sometimes it came up due to circumstances (two parents at my school passed away from it, two teachers were dx'ed after me, another parent dx'ed last year). Most are amazed and I try to explain things simply and matter of factly. Reactions have been great, but I still leave some folks a bit confused (You've never had chemo????). I feel very free now, because stage IV is just my reality. If others have a tough time with it, I guess they need to figure out how to deal with it. I think this "liberation" has helped keep my dark clouds away because I no longer have to be guarded.
We are getting a new principal. I will wait to get to know her and I think that at a certain point there will be a natural opportunity to tell her. After all, most of my (very small) school district already knows. Take care, all!
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I saw this quote recently, and it stuck with me.
"If you are reading this, Congratulations, you're alive. If that's not something to smile about, then I don't know what is." Chad Suggs, Monster Under Your Head
Lynne
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