Anyone else feeling completely out of sorts?
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Divine, I needed to read your words. Thank you. I haven’t been too unhappy to be home. I have felt like I was in a holding pattern waiting to get back to normal. I realize now that I’m ok with things. I used to remind myself not to wish my life away, always anticipating that next event. I should be reminding myself of that now too. It’s DH’s birthday today and I’m glad to be sharing it with him and glad to plod through my neighborhood walk even with a lot of wind.
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“I know many talk about a return to "normal" but for us MBCers what does that mean?“ I have to admit, as soon I heard the first coronavirus spokesperson saying that society is going to have “a new normal” , I rather cynically smirked and gloated to myself that now everyone gets to hear that cursed phrase and live where we have been living.
Not that it really gives me any joy, but I did have that evil moment of schadenfreude.
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I'm new here. Today is my 66th birthday. Today I got the news from my oncologist that the two nodes we hoped were just lymph nodes over-reacting to infections I've had are metastases from my 10/2017 diagnosis of TNBC. Both are 1.7 cm. It's honestly good - makes me teary, I'm so new to this MBC news - to read how others feel about not being able to do that last thing again, while I still feel like it. Covid is awful. My daughter and grandchildren live in Galway, Ireland. I'm not sure I'll ever see them again in person. But my son, 32, has been clean for 11 months and is now a peer mentor at his rehab facility. What a true gift that is, getting to know this amazing young man who is my sober son. Thank you for being here.
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Hi Paula..
First, Happy Birthday and second, welcome to the club that no one wants to join. The first couple months are really the worst.. but soon you will settle into a treatment routine and life goes on.
In all honesty, the majority of my days are great. I still have a really good QOL, and minimal if any physical side effects. The part I still struggle with from time to time is the mental part. Most days I can put this crap in a corner of my brain and just live life. COVID has just thrown us all for a loop. There is a second dimension to the virus for us. The great thing is we have this site and each other. No question, feeling, gripe, rant or celebration is off limits. We celebrate each other’s successes and support each other when we have a tough day. You are loved, welcome and understood here.
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Paula, happy birthday! So sorry you got such news today, though. Welcome,and wishing you well.
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I'll add my voice to the happy birthday chorus for Paula. How great to have a 32 year old son (I have one too!) but even better that he's now helping others.
Any chance your daughter and grands could come to the US if travel to their location is not an option for you?
The inability to plan trips is what's making our pandemic experience disappointing. I don't mind being confined at home - I've tried to explain to several people how it's pretty much like both times I was in active cancer treatment. With the initial diagnosis, I was off work during the summer of chemo but felt like roadkill. Then, when mets were found, it was months before I could resume some normal activities. I think this recovery is going to take longer...
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Happy Birthday, Paula!
Welcome aboard. Lung mets vet here. I've been living a long time with them. Chances are excellent that you will, too.
Wonderful news about your son!
TIna
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I got diagnosed Feb 10 and my area went into phase 1 lockdowns by mid March. No counselling except by phone or group zoom. Alone to all appointments and treatments.
My symptoms and side effects have taken ages to get under control. Honestly, we're not there yet. I can't make plans from hour to hour
I know I'm depressed. I'm also super angry and I don't want to take joy in ordinary days. Years of meditation & reflection behind me but right now I'm taking comfort that even Buddhist nun Pema Chodron wailed and threw rocks when she got particularly bad news. If my parents could visit, if some friends were able to come, if I could plan some trips, I might have more hope. As it is, I think covid will keep me in my home till I die.
My TNBC is super aggressive so I just think I'll run out of road before a vaccine is avail.
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Welcome Paula.
I read all the posts here and just shake my head at how the public is reacting to the stay at home orders. Protests. Rants. They don't know how good they have it. Such stupid, spoiled people whining about wanting to go to a ball game, a restaurant, a spa. Whining about their "rights" being trampled on. They would not last a second if they had to live with MBC in this COVID world. The things these wonderful women post on here--- wanting to see loved ones again, wanting to do some things while we can, fearing we may die alone.
We are Strong. We are Brave.
I love you all.
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moth-I get your angst about the treatments being intolerable. I spent the 1st 3 months trying 2 different chemo/therapies that didn't' work for me. I was exhausted from trying to recover from side effects (drop foot, then hand foot syndrome) and super depressed. We weren't in lockdown yet, so that was all I had to worry about, At my 3 month appt for my 3rd treatment, showing stable scans, I still had trouble with depression and spent most afternoons in bed. My MO prescribed a daily anti-depressant and anti-anxiety pills for sleeping. Can't tell you how grateful I am for those. I was down to 1/2 sleeping pill when the lockdown hit and I'm back up to 1 each night. I still need to nap each afternoon, but I'm slowly finding projects or gardening to keep me somewhat busy. I haven't read a book since diagnosis, just can't concentrate. My book group lets me join in the zoom meeting anyway. My DH & I host or attend happy hours in our yards with 1-2 friends (all 8-10 ft apart, bring your own everything, only touch chairs which host wipes down, no going inside homes) about once a week. These forums are a great place to understand how others are coping or to vent your frustrations. I get comfort just knowing how others handle troublesome situations, especially things that seem too trivial for the MO. Planning right now is impossible, so do something TODAY, even if it is something you'd never have considered an accomplishment in your normal life. You got hit with 2 life changing events at the same time, realize that. Best wishes.
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nopink, your words to moth show a deep level of insight “you got hit with two life changing events at the same time, realize that." It touches me that you are so in tune with what she's dealing with.
Moth, I don't have words to make things better, but feel for you!
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I may have been out of the house more than most of you- between hosp Stay , labs every 4 days and blood transfusions every 5 days. I wasn’t worried about covid ( think I had it maybe) I was too sick To worry about that. . I was interacting with infusion nurses and out of the house - the lab etc was deserted though. Now that I feel better I notice the weird situation of not being able to decide what is safe or when it will be safe - I really miss my granddaughter- my son is with us now- that has been uplifting. Cat is also very old
I also felt like I had finally decided to live more freely- fly to the bDay party, be less practical. And wham-
Able to read again and the great British baking show is very comforting. Gardening and walking.
Moth- hopefully it will be safe to see your parents- if they have been careful- I think you could and it would be very healing.
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Divine, no words except I'm sorry you're going through all of this!
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moth: I am so sad for you. I wish I could just come over and give you a big hug and say cry away on my shoulder. But then - if I could come then so could you loved ones and their arms would be so warm and comforting. Going alone to appointments and treatment is lonely and heart breaking. I was so happy that I could have my husband with me when we sent together to the MO in the early days. I understand the "finding no joy". I make dolls. For the first five months I could barely even go into the room where I have my suitcase of fabrics and boxes of clay and wires and all the stuff that's needed to create them. I couldn't look at them without being overwhelmed with grief and "why bother?" - I'll be dead soon.
Scream if it helps. We are all made to feel we should behave like warriors. Be positive. Easy for them to say. We are not brave, positive thinking warriors. Our hair falls out. We feel like shit. We are terrified human beings whose lives are disintegrating. If we are having some good days we think - "but will it last? For how long?"
I am glad that Imbrance adds no longer have that ridiculous "new normal" What the hell is that supposed to mean? "Living in the moment" is more accurate but still doesn't show the harsh reality of that moment.
Along comes Covid-19. Gee thanks. One more thing to fear.
candy-678: yes on your comments about folks whining about not being able to get their f'ing hair cut. Puleeze. I also think, rather uncharitably, about everyone being scared. Yes, be scared. You should be. But now you know how we feel every day. Every day.
Taxol gave me a horrid chemo brain. I tried to do crosswords and couldn't figure out the clues. let alone what the word should be. I joked that I would get "feline pet" , three letters starting with "C" and I'd be umm. gee.... Actually, not that bad but close. I am back to medium and hard. Some things do pass.
Keep safe, everyone. The Black Death only lasted three centuries
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Beautiful post, Elderberry.
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Elderberry- Love your post, but I do want a hair cut. Been 5 months. Layers grown out, ends split and dry. Longer than I like it for me. Just a simple hair cut. Not a party, not a tattoo, not a meal at a restaurant, not a night on the town with friends. Just a freaking hair cut. Just to make me feel better about myself. I have no one to give me a home cut and I cannot cut it myself.
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candy-678: Doing your own cutting could be a bad idea. Fortunately mine is just coming back after Taxol so right now it is short and curly and I look like a poodle. I figured if my hair was the way it was pre-Taxol and I couldn't get a trim I'd wear a snood and look like a school marm. There's only so much avocado oil, or argan oil or any kind of oil to help dry, splitting hair. BC is opening up hair salons after the Victoria Day long weekend (Happy Birthday, Queen Vicky) Hairdressers and patrons both have to wear masks, the hairdresser has to wear gloves when shampooing, towels have to be washed immediately after use, each work station has to be disinfected between clients, hand sanitizers at every work station. I have a friend whose daughter is a hairdresser and she is very anxious about going back.
BC has done pretty well overall in its response. Out of our 10 provinces and three territories there are five that have had zero deaths. Can't recall off hand what BC's tally was but it was mostly in major cities where the populations are and sadly most from LTC homes.
Let us all hope if not for a miracle of a vaccine turning up soon, at least a really good treatment in the meantime.
I am sure that you are still a lovely looking lady even with dry, splitting hair.
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Well said Elderberry. But... also in the I need a freaking haircut camp! I keep mine short - have ever since my first dance with chemo in 2001 - so missing two appointments so far is really annoying. I secretly thought about asking my MO for a round of Taxol just so that I could start again! Kidding....
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(virtual open arms)
You are my people! Thank you for expressing the frustrations, challenges, rages, hopes, and loss of hope that comes with this diagnosis, at least for me. At least as I enter this Stage IV life. It means so much just to hear your voices. To know that others are out there, coping as well as anyone can, with Stage IV and Covid.
MOTH - You and I seem to be the only TNBC folks on this thread. I hear you loud and clear; we've been dealt a crappy hand. But do know that I'll be looking for your posts, and I am here in Atlanta, GA, for you as well.
My next step is a virtual appointment with the kind of pulmonologist who can do a bronchoscopy with biopsy.
My how perspective changes.
I saw Doctor L in 2014 for lung granulomas. He was personality zero. Really rude and abrupt. So I changed to another amazing, personable doctor in the same group. That doc does not do the procedure. My oncologist said, "Well, of course, Paula, Doc L is a proceduralist. They never have any personal skills!" She then offered to find another pulmonologist, but as he was her first choice, I said, "Give me Doc L. I want the best person." One's perspective changes when we're talking life and death.
(another virtual hug)
Thank you, my people, for speaking my language and thoughts, for your empathy and lack of judgment. It's really helped me already to be here.
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Elderberry- I lost my hair with the IV chemo we used when first diagnosed. Very traumatic seeing it fall out and then going and getting it shaved. Wore a wig for a long time. Grew back slowly--Yes Curly. Now it is wavy but very thin, and length to the nape of the neck. Falls out in the shower and when I style it. I like my hair short with layers to make it look fuller. You know, give it the appearance of more hair than there really is. Still can see scalp, though. So now the layers are gone, lays flat on the head so you can really see how thin it is.
I have already had a plan for the germ issue, with the Ibrance use and low counts I have had to think about that already with cold/flu season. And my hairdresser has already done this for me before.... I make appt for the first client of the day, wear a mask, the hairdresser has a clean cape ready for me, and we schedule time for my cut so I can skedaddle before the next client is due. So sounds like a good plan for COVID too. Of course, the hairdresser will also be wearing a mask and cleaning her station more frequently. And I plan on coming home and throwing clothes in washer and taking a shower. So... with all that I should be pretty COVID safe, I would say.
I just want a haircut.
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Candy, that's a good idea about being the first appointment of the day for your hair cut. I usually am with mine. I've been with him for so long, I call him my "Hair Husband". He was the one who gave me my buzz cut 12 years ago when I went through chemo. I know he'll work me into a time where we both feel safe. I'm not desperate yet, but I feel bad that he's probably been without any income since this whole lock down started.
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Hi everyone: I had super curly hair as a kid. It is very fine so when it gets long it straightens out to just wavy. I know lots of women get curly hairy post chemo before it returns to its old self. I am hoping to keep my curls. Good idea about being the first appointment. I always did long before everything came crashing down. It got done and then the rest of the day unfolded.
Good luck with getting your hair done, Ladies. I know you'll feel better. Don't you think a shampoo with gloves will feel weird?. I loved getting a shampoo from the hairdressers --- all that scratching away at my scalp. I am sorry if I didn't sound sympathetic about haircuts. I do understand but I worry about spiking the virus counts.
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Elderberry- We are good. I understand thinking that a haircut is not "essential" in our current world. And I guess I harp on it (have posted about wanting a haircut in other Threads on here). I guess I think "Just a haircut, nothing more". And I will be careful about the virus germs.
Years ago my old hairdresser did the whole shebang--- wash, condition, cut, style. This hairdresser (and I love her) just does a damp cut. She wets down hair with a spray bottle of water and then cuts it. That is it. I do miss the washing and the fingernails and massaging. Oh well. Things were always better in the olden days, right.
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Thank you for your kind words, Rabbit. They meant a lot to me. So many of the posts above are eloquent and heartbreaking. I think it does not do us justice to call our expressions of how we feel “venting”. I think it is important not to minimize our experience. I asked some social workers and a therapist from my cancer center what they are hearing from patients in these days of covid. They confirmed what I see here, that many of us have struggled valiantly to cope in the best way possible while living with cancer, and now the covid restrictions have removed so many things we depended on to help us cope. Things that are important for our wellness. Simple things like seeing family in person, taking small or large trips, being part of exercise communities, looking our best. It is important to acknowledge the grief, anger, and other feelings brought on by this new set of losses. Also we have new fears to add to the ones we already live with, fears that we will not be able to spend our last months or hours as we had wished. I think it is important to recognize all this before going into coping strategies, adapting (even more), focusing on what we can still do, being thankful, etc. For me, being able to talk about this and be heard has been a relief.
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Well said, ShetlandPony! Amen.
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I agree Shetland. Thank you for so eloquently stating what many of us are feeling. I feel fortunate compared with many but am not immune from the impacts. Having an opportunity to express this frustration and worry is so important for our wellbeing.
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Shetland, I am nearing the point too where I am having a hard time denying (externally, at least) the fact that 5 years has taken its toll on me as well. I feel like a stack of Jenga blocks, with one after another are being pulled out and there are now so many "holes" and the whole stack could completely fall over if the wrong block is pulled. It has been a strange time for me as it has been for all of us in our own ways. I moved into a new home just at the start of this COVID lockdown. We squeezed in the move just in time. I am working remotely and am exhausted. My always demanding job has been even moreso with COVID. I spend hours most days on various COVID-related work calls on top of my regular workload. However, I will say it has been nice to spend more time with my husband and son. I am tired and want to take a few days off but feel silly asking for time off. I don't talk about my treatment and BC circumstances at work and it just seems that people would think it was odd to take vacation now when there is nowhere to go and nothing to do. Looking forward to having Memorial Day off. My job is not rushing anyone back to the office any time soon, which is great, even as my area continues its phased in reopenings. I am in a heavily impacted COVID area. Depending on the circumstances when we do go back, I may need to say something about having a compromised immune system if I feel it is too risky to go back to the office just yet and need to continue to work from home. At least a few people in my department have been diagnosed with COVID, one of whom is on my team and has an office near mine. In some ways, I hope that I and my family already had COVID back in March when those in my department had it and when my I was a bit sick. Neither had any major symptoms and didn't find out they had it until weeks after they felt better. Back then, if one was lucky enough to score a COVID test, it was taking at least 14 days to come back. Also, I feel like an awful parent as my son watches hours of his iPad these days. I tried to fight it in the beginning but gave up pretty early on. I do my best to get him to do attend his class and do his additional school work on his own and physical activity every day but there is only so much school work a 5-year old preschooler can do in one day and there are limited options of things to do around the house. I play board games with him and take him walking in the evenings but there is only so much of that I can do as well. I am so exhausted. Everything falls on women during COVID. I will say that for anyone with school aged children, I would be willing to bet the balance of responsibilities for those where there is a mother and a father in the home - work, children's learning, other responsibilities around the house fall much more heavily on the women in the house.
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I like the Jenga analogy, JFL. My goodness, moving is exhausting, along with everything else. We moved a year ago. I worried it would be the end of me. If you have time off available, do you need to justify it? If you want to give a reason and do not want to bring up cancer, you could mention just having moved and needing to get some projects completed, or needing to set up some things for your son now that he is home full time. I’ll PM you some ideas about kid stuff. Thanks for saying you understand being a Jenga stack.
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Thankyou Shetland and JFL for your words.
I am not coping and have decided I needed to call the Onc Dept Palliative Care RN. She talked me off the ledge in 2016 and then I started Celexa. Yes, I feel vulnerable, yes I feel like time is at warp speed and I am missing what makes me happy. COVID19 has shut the door in my face to live my life.
I feel like I am constantly in a slow dying mode and it gets harder each day to be happy to be alive, plus guilty for being alive. Just thinking out loud. My DH, oh, how I love him, doesn't want to talk about my cancer. He has to cope while I am here and handling treatments. He keeps me feeling normal and I love that about him.
There was a BCO poster back in 2016, I think her moniker was Longtermsurvivor. She embraced her last days and even had someone post on her behalf when she was transitioning. She was not afraid and even more so, happy to experience all of it..living and dying.
Sorry to combine COVID19 with end of life topic, maybe these days, it is blurred for me..the isolation, losing purpose, but maybe I will find mental strength to carry on and be happy. It is a goal and I can do this.
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Shetland, I just read your suggestions you PM'd. Thank you. All great suggestions. Like you, I was worried the move would do me in. I remember you going through your move. However, the thought of spending the rest of my life in our prior home that no longer fit our family and caused ongoing stress was not a good situation either. I will say I think there was divine intervention with the move. I could not have orchestrated it falling into place as well as it did. Never could I say that about any other move in my life as all my prior moves have been mostly traumatic. Even the COVID situation helped with that. Much easier to unpack little by little when one is home all day, every day.
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