Anyone else feeling completely out of sorts?
I can’t quite put my finger on it.. but between new COVID life, working from home full time, being isolated from friends, worried about a COVID diagnosis on top of everything else, a dear pet who is getting close to the end of their life and upcoming scans, I’m feeling all out of sorts.
Nothing about life is “normal” when you are a stage iv patient, let alone during a pandemic, but this is crazy. I’m not sure if I need a good cry or a good laugh. I wish I knew exactly what my issue was other than “all of the above” so I could work on it and move on. Sigh.
I know this too shall pass but please tell me I’m not the only one in this boat
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Yes. Even the pet.
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Yes, and even the pet for me as well. My beloved lab is 12. She and I keep eyeing each other as she has slowed down tremendously. I can't really describe the feeling I have but it is somewhat like barometric pressure and a storm needs to come and clear the air. A good cry might be that storm for me:) Covid sure doesnt help.
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Yes. One of my coping mechanisms for living with stage 4 was ensuring that I was doing things I’d always dreamed of, which is mostly travel but other things too. Having my ability to do that cut off so quickly, and knowing that it truly won’t be okay to travel like I have been until there’s a vaccine has left me confused. Add to that the worry of becoming infected and how My body would handle it brings fear.
I’m Trying to find the silver linings and enjoy those but I do feel out of sorts 24/7.
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Yes, I too am struggling a bit with losing valuable time to this situation but being nervous about pushing the envelope. We have had limited cases here so the risk likely remains low but if I get it? Pretty sure that would not end well with my compromised lung. I will be seriously pissed if I get snuffed out by a virus at this point.
Add to this that apparently it’s okay for my next appointment with my MO to be a phone call... not impressed with that either.
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Every day is the same - get up, get on the computer, sit on ass, do 'work' and then watch tv and go to bed. I took two days off this week and will just cancel them because whats the point? I can't go anywhere or do anything. Nothing is going to open back up either so the whole point of living here for the cultural aspects kinda doesn't matter anymore. That tips the living scales - everything would be cheaper/easier back in the US except... health care. But I can't even access that right now, the NHS is going to be backed up even further, and even with health insurance here who knows when you can even get back to seeing someone privately. Which I really need to do because rushing through an appointment in under 5 minutes every month isn't cutting it.
We've got some things to decide soon - end of summer, and probably after the election. I should probably get on top of filing the federal stuff I need for Medicare and all that through the embassy.
All I want now is a nice, big, clean relatively empty swimming pool, a good PT, a forward thinking and approachable MO, and a house with walls I don't share with anyone else, preferably with a view of water. Oh, and Trader Joes and Target.
I think its a combination of the boredom and uncertainty as things start to move forward. On the other hand, maybe a nice high fever from Covid could knock out the cancer permanently, if you survive it! (just joking.. sort of)
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Actually Sondra I was thinking along similar lines re: COVID fever .... if, as u say I survive it!
I’ve been on edge this whole time, even tho we’ve had very few deaths here in Sydney. I unexpectedly lost both my beloved bunnies a few weeks ago. I’ve been crying a lot lately, very unlike me.
I also feel like this lockdown is cheating me of whatever time I have left.
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Yes, I too feel out of sorts.
As Jen said, 'fear' if I would get the virus. With the cancer and my autoimmune issues I already have, I fear I would not fare well. And as Sadie said, 'losing valuable time' as my cancer is stable for now and yet I cannot do anything but sit in my house during my "good" days.
When I get to the end of another day, I think "there is another day gone". And with MBC the days we have are precious. I hate to waste them.
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I agree. It's a horrible waste of our precious time.
I feel like the proverbial sitting duck, wondering which will take me out--Covid or cancer.
Tina
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I am in a COVID "hot spot" right now because of all of the meat packing plants in the area. I have to go to the local hospital tomorrow for a MRI because of pain in my lower back, right buttock and down the right leg that I can't get to go away so MO wants the MRI. I am scared to go to the hospital for fear that I might catch COVID-19 but can barely walk now and hoping that whatever they find is not progression and is instead something minor. Our 12 1/2 year old yellow lab passed away last July and plan to get another lab soon, depending on the results of my next scan in late May or June. My oldest horse is having to be my "dog" right now and I don't know what I would do without him. It certainly is hard to see our pets age and then to eventually lose them.
It will be so wonderful to be able to get back out in the world and try to get back to normal. I realize some things may change and some of it may be for the better.
We are all fighting too hard against cancer to let a virus take us out! Stay strong and this to shall pass.
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It makes me so terribly sad that I can't be with my grandkids..that was why I want to live..that was my inspiration..my family.
Now..nothing. Depressed.
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Yep, me too. I can't help but feel like I am burning precious daylight with this virus lurking around outside of my safe walls. And yet I resent the walls of my home because like jensgotthis stated, my main coping mechanism for stage IV is to travel and get out with friends whenever I can. I live to make travel plans and to drive to Kansas to see my Grandkids who live there. After 11 years with Bone Mets and steady progression, I often wonder why I'm doing treatment and it always comes back to the grandkids. Sure, we FaceTime but it's just not the same.
I'm having radiation this week and ironically I'm happy for the change of pace! How twisted is that??
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Yep, me too. I can't help but feel like I am burning precious daylight with this virus lurking around outside of my safe walls. And yet I resent the walls of my home because like jensgotthis stated, my main coping mechanism for stage IV is to travel and get out with friends whenever I can. I live to make travel plans and to drive to Kansas to see my Grandkids who live there. After 11 years with Bone Mets and steady progression, I often wonder why I'm doing treatment and it always comes back to the grandkids. Sure, we FaceTime but it's just not the same.
I'm having radiation this week and ironically I'm happy for the change of pace! How twisted is that??
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To be honest, I am not always sure how I feel. I am working from home but what this looks like when you’re teaching first grade is beyond anything I imagined I’d be doing as a teacher. I am thankful that tech let’s us do something with our students but suffice to say when they’re in their own homes, staring at a computer screens, focus is a big issue. So the school week still defines my days but I’m home and in sweats.
I have never had a bucket list and have been fortunate enough to have traveled extensively when I was younger. I’m just kind of hoping to work another year or two and then see what I want to do.
I’m not too afraid of catching the virus. Not that I would welcome it but thus far, my dd’s have been rabid guardians of my isolation. But of course, as things start to reopen, I will wonder about how safe it is to be out. The virus and all it’s repercussions to our society as a whole has just thrown me off kilter in some odd undefinable way. Just look at all the different ways it’s impacted our lives just on this thread. It may be different for each of us but in one way or another this has tipped everyone off their axis.
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Yes, off kilter for sure. I’ve been pretty even (in terms of mood) since my dx a little more than a year ago. But now I feel like several of you here that said you feel like you’re wasting valuable days waiting to start getting out again. DH and I had a cruise scheduled for the end of this month that we were really excited about, but it’s cancelled, of course. We rebooked for May 2021. I hope I’m able to go.
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I agree with everyone on this subject. Been at this cancer thing for 22 years. First grandchild born end of December and I'm lucky to get daily pictures let alone a face time. The kicker is they live one mile away. I am so beyond sad. I kind of feel like it's a cruel joke. And last treatment didn't work and I have to start Piqray. Time is ticking.nie, I'm going to cry!
Stllivin (but for what?)
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Yes, for most of the reasons already mentioned. Definitely feel cheated out of “good time” with my family, self care and new experiences. Was planning a move which by now should have been well underway, now my plans are in chaos. Just really hating everything about this.
At least my local park has re opened so I can walk again....and maybe the curve is starting to bend.Thankfully no one I know has been sick but a few young people my son knows in New York have been struck with COVID and recovered. Praying this will be solved soon
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Thank you for all of the replies.. it helps to know that I’m not alone in feeling out of sorts. Sending light and love to each of you.
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in addition to what I wrote above, my feeling out of sorts is also because the hours in a day seem to pass so quickly but the passage of days feels sooooo slow
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I have been figuring out lately that it is time to acknowledge the incredible toll 5+ years of mbc treatment has taken on my body and spirit, and how I can no longer pretend to myself and others that I am basically great just a little tired. And now that I reflect on how the pandemic is contributing to my feeling of weariness, I realize that although it has not changed my daily life in big ways, it has been a real knock-down punch coming after a series of punches. Mbc causes so many losses, just loss upon loss. Quarantine has taken away many of the last few sources of joy and wellness I still had: My dance classes and growing friendships there and the chance to perform, my yoga classes, shopping for flowers to plant, day trips with DH, etc. It has taken away my ability to physically be there to help my relative through her own cancer treatment. It has made me afraid in my own home, of incomIng groceries and mail. Not to mention having wrapped my head around eventually dying at home on hospice, I now fear the possibility of dying alone in a hospital if I get the virus and do poorly. Having learned to carry on and set aside fear, and to adapt to losses, a whole new set of fears and losses has been handed to me. Can I keep summoning the strength I need? Lately I just lie around a lot feeling exhausted, and I hardly know how much is physical vs. mental. I don’t want my DH and kid to have to deal with my being out of sorts for very long.
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Hi All,
I am really struggling today. I am worried that I will spend my last able, relatively healthy time, unable to do some of the things I would like to before the cancer "catches up" with me and I have no choice but to stay home. How do I come to terms with this as a possibility? I really feel like I need to let myself cry but I don't want my family to see me lose it...
I trust this feeling will pass for all of us, let's just hold on til then.
Stacey
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So many comments echo my feelings--Wasting what time is left. I'm doing well (I guess, scans @end of month will tell better story) except for fatigue, but like many stated, is this from treatment or mental weariness? Can't count the projects in my head that I either start and stop or can't see ever being able to enjoy or benefit from, so I ignore altogether. I had just started water aerobics class when we locked down. Have exercycle @home, but no self motivation. Seems pointless to let myself think about WHEN I might be able to travel anyplace. Find myself locking down when others talk about plans, even simple things. Afraid to go there and get dissapointed. I think the mental is hitting me more than I've admitted.
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I had a worse year last year which culminated with saying goodbye to my beloved cat of 16 years, Peach. I'm still heartbroken over it.
I'm not happy about the pandemic, but I have to adapt to the current restrictions. On the one hand, there are tons of things I wish I could be doing. On the other hand, I focus on what I can do.
I don't let myself spend much time ruminating about "if only". Once in awhile I get a whiff of anxiety about the seemingly never-ending time span this pandemic may fill up. But I push the thoughts away. I cannot control the pandemic. I have to find ways to work with it and ways to work around it.
On the one hand, my life has been full of wonderful things. On the other hand, I've had the rug pulled out from under me so many times it's not funny. I hate when it happens, but over then years I've developed a few skills to adapt to the ever changing landscape of life.
I don't feel like I'm wasting my days being mostly home during the pandemic. I don't feel like I'm wasting time or that time is passing me by. I find or create ways to like what I'm doing. I enjoyed the lemon meringue pie I made for Mother's Day. I just finished a beautifully written memoir by Roseanne Cash and have started listening to some of her music. I delighted in the red drift rose bushes I purchased from Amazon and look forward to their blooms all summer.
We're in uncharted waters, so it's valid to feel completely out sorts during this most unusual time we find our country and our world in.There's an expression “Enjoy the gift of an ordinary day." I may not be living large, but my life still has meaning every day. I would say that to all of you, too. As women living with metastatic breast cancer, our lives are still meaningful even as we live within restrictions due to our health status and the pandemic.
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I'm a bit at loose ends as well. We want to sell our house & move off our little island paradise. Dealing with the ferry overloads every summer is becoming overwhelming. Our island has become so popular with retirees that seem to need to go to the city everyday that I have to sit in the ferry lineup for one or two sailing waits to go to my medical appts. So a 20 minute blood draw takes 4 or 5 hours.
But with Covid everything is on hold. I feel good right now, spring weather is here but can't go anywhere, can't list the house, can't look for a new house. Fingers crossed that i will still be well enough to pull off a move when restrictions are somewhat lifted.
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Divine- Thank you for your post. "Enjoy the gift of an ordinary day". I like that quote. I need to get and keep that mindset. Enjoy the sun streaming in the window today. Enjoy that I can come here and visit with my virtual friends. Enjoy the feeling of the sheets when I go to bed at night. I will try to have that mindset. I will try to enjoy my life, my house. Even when I cannot go out and do the things I used to-- due to the virus scare or due to how the MBC effects my body.
Hugs.
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I’m going to say overall yes. I had just gotten to a semi good place before all this started took me about 8 months to get there. Was sleeping a bit better, I could take a little nap here and there and boom, all this happened and it became adjustment phase all over. I live in an epicenter with strict restrictions. I feel sad sometimes seeing so much shuttered up and being told where I can go etc. I’ve tried to find joy in my yard. I love working in it so one of my online shopping splurges was a lawn chair with a canopy so on nice days I can sit out there with my music and admire my work. Was outside for most of the day yesterday working my yard and then in the late afternoon I spent 3 hrs just sitting in my chair. Felt soooo good. My husband and I are seeking to beautify our nest and so we have plans to brighten our outdoor space with some flowers, I’m growing giant sunflowers again after many years. Looked up a few new recipes that include a cakey strawberry crumble. I’m dreading winter and the isolation dreariness and coldness that comes with it, can’t imagine going through this in winter and I’m so trying to soak every bit of joy I can now that rains are letting up and the sun is more present. In essence it’s the little things, the most minute of things keeping me going.
Living with MBC is hard but it’s harder I think when the routine we develop to cope gets broken up, throws everything off balance, you already feel like your walking a tightrope and it feels like we are being told to walk it without that long flexible bar with all that’s going on around us. We indeed are in uncharted waters ladies. Sometimes I want to come on here and just vent vent vent away and then I see so many are feeling exactly what I am. So many women feeling what I do, it’s comforting and sad all at the same time.
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I have coping mechanisms in place and I do keep busy with my days and I appreciate that my life is precious each ordinary day.
I just wanted to vent with my metastatic breast cancer peers my frustrations of not being with my family while I feel well. And yes, I do worry those opportunities will become less and less as I do live in the moment.
I miss my grandchildren.
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Sandi, gentle hugs. I've been trying to do the all above mentioned to try to block out not being able to see family, friends etc for months. I keep telling myself that things will ease up and then I can do all the things I want with those I love while I'm able to do so. It hard to cope and then not have those with you that help you cope, the physical touch of a support system. I gotta say, I miss HUGS. I'd just like to be able give and receive a massive hug, FaceTime and text messaging doesn't cut it. So I escape to try to find joy in what I can.
Maybe I can pass along some things I've heard people are doing to see grandkids etc and see if perhaps this is an option. Some families are meeting in a large parking lot and parking 8 to 10 ft from each other and then sitting in their open trunks and chatting with each other that way. One of my friends brings a lawn chair and sits at the end of the driveway to watch her grandkids play in the yard. Ideas? I know it's not the same but trying to think of something that could give you something with them.
Shetland, I did want to say seeing your vulnerability in your post abovemade me see you as even more of a pillar of strength. I lurk on the liver thread and PM with Nicole occasionally, I think your awesome, everybody does. Some strong, strong ladies on that thread, including you Sandi.
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Divine, as always an insightful, thoughtful post.
I do want to clarify that I am not unhappy with my lot. I'm basically a home body and love this time of year. My garden, although always several steps ahead of me, is glorious right now. I love to putter, plant up my pots and enjoy the return of sun and warmth. And yet, there are definitely some challenges.
I know many talk about a return to “normal” but for us MBCers what does that mean? Normal for us is quite different and can change so quickly. When I reference precious time that’s what I am referring to. It’s about having the ability to do those things that bring us joy today.
Being busy is not a problem for me. If anything it’s the opposite problem. My work has been heavily impacted by COVID with a substantial increase in need and volume. I love my job and feel, more than ever, that my work is meaningful but wow! There are not enough hours in the day. As a result my hours are a bit long and finding time for myself has fallen by the wayside. Add to that EVERYTHING takes so much more effort.
It’s all okay (except for those jerks who are now not taking this stinking virus seriously!) but...definitely a bit out of sorts.
Stay safe everyone!
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Sadie, challenging is a good way to describe things.
I don't want to detract anyone from venting, so I apologize if my above post comes across as too positive and I will even delete it if it helps, no problem. I am all about women embracing the full spectrum of their emotions and have gone on record many times to say just that. We are allowed to bitch, gripe, moan, despair and claim any other emotion if we want and not have to “keep sweet" the way society tries to insist is the only acceptable female emotion to have.
I really did have a shitty year the 12 months leading up to the pandemic. I won't go in to heavy detail, but it involved progression (twice), debilitating side effects from treatment, plummeting QOL, two hospital stays, financial and health care upheaval, astronomical prescription costs, extended family relationship trouble and I mentioned the heartbreak I continue to feel over losing my beautiful, loyal cat of 16 years. So all that and then, as I was feeling some equilibrium returning, bam, cornavirus restrictions.
I'm only comparing my own situation to dealing with the pandemic. Everyone here has their own perspective of how it's affecting them, and each one is valid.
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Divine. I certainly don't think you misspoke and always appreciate your posts. This virus is bringing out the gamut in terms of emotions. And yes, given your year, it's completely understandable.
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