My Husband, My Life, My Love, My Family, My Cancer
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@shanagirl Im so sorry to hear you’ve been suffering both physically and mentally. Cancer absolutely sucks. It looks like it’s been about 6 months that you’ve been on this roller coaster (or under this steam roller). That was about the time I turned the corner. Not that things are roses now, but I started to come out of my slump. There was no magic wand involved. I found BCO (which helped tremendously), I got out of the house as much as possible, I scheduled lunch dates, I did things that made me happy as much as I could (dancing, gardening, aquasize, walking), I practiced daily gratitude, I got a painful area radiated. All this together started to lift my spirits. Not overnight, but it happened.
I’m not sure anyone I know really understands what I’m going through - even my friend who had colon cancer 15 years back or my sister who had stage 2 back in 2000. My friend is a wonderful, compassionate person but she just doesn’t get that inviting me to dinner reservations at 7 pm is no longer in my wheelhouse. I feel so guilty saying no. She just doesn’t get that I can be miserable inside and “look good” on the outside. By the way, she’s only known me after my MBC dx so she doesn’t know the real me. Right now, I’m at a point where I am utterly wiped out everyday. And I know I need to gain strength for my new upcoming treatment plan. So right now I’ve decided that I’m going to take what worked in the past and move forward. After posting this, I’m going to see if my hubby wants to take a drive to our favorite Cuban Cafe in the Everglades for lunch. I love a nice car ride on a beautiful day and I love food. And I’m going to walk in the pool later for activity. I know the best thing for me mentally and physically is to get off the couch - even when I’m feeling like breathing is a chore.
I hope you find some good coping mechanisms and remember that your friends on BCO are always here to listen. You are never a burden to us. We are so much stronger together. Hugs.3 -
Shanagirl, you come and tell us all about how you are feeling, that is what we are here for, not just my what am I eating bit or what I'm doing for a day. Never feel as though you bring us down, we are here to support each other in a safe space to talk about anything we need to. In your pocket.
For myself, I wanted to pick up wheat bran but I was smart and took the bus, between walking in the store and the bus stops, it was still 45 mins. I am happy with that and feel pretty good.
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@threetree,
Your words are very much appreciated, and I get so much what you are saying. I know everyone here totally gets how I’ve been feeling the last 2 weeks. Thank you for scrolling down and stopping to type the encouraging words. It means a lot.💙.
💕Barb
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Shanagirl - Very happy to hear that I was of some degree of help. Your very welcome for my scrolling and seeing your post this morning (smile). Hope you are having a better day.
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rk2020, and mara51506
Uggg I just typed a nice long response to you both and I lost it!!…So annoying😝but without typing so many grateful thoughts for your words of encouragement, thank you ☺️
💕Barb
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Moderators
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shanagirl, we totally get it but I hope you can also see that us stage IV girls don’t always feel sick and it’s likely that what you’re dealing with right now will pass.
I went to town today and stopped by a local BBQ cookoff. The sausage was so good but I managed to save a little piece for DH. It’s a hot day though, so now I’m chillin’ in my bar 😀0 -
@shanagirl ❤️
If you do happen to come to one of our weekly Zoom meet-ups, @illimae is one of the many members on the boards that comes on. The groups can be fun and run the gamut of every other emotion. 😎
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Shanagirl….Big gentle hugs.
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shanagirl Sorry you hit a rough patch. This disease is such a rollercoaster of emotions I have experienced many ups and downs. The mental fight to me many days has been more difficult than the physical. I just try have my good days outnumber the bad.
Never feel like you are bringing us down we are here to pick each other up no matter what! I hope you feel better and sleep well tonight. Wrapping you in giant hugs 🤗
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Shanagirl. Cancer is wicked. Depression is nasty. Pain stinks. It's a vicious cycle.
You feel robbed of your life and joy. Don't want to do a damn thing. I want sympathy but nobody to get it from.
When I'm asked how I'm doing, I try to answer "good enough". In the past I would say "excellent".
One thing after another. I don't like this new hobby of taking care. I do go through waves. I hope you're riding high with me soon.
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@shanagirl , feel free to vent. I’ve also been feeling crappy, recovering from a broken rib, having lots of diarrhea from Verzenio, and exhausted. Plus I started therapy and my therapist seems very skilled. Since being diagnosed I hadn’t cried about it, just couldn’t. In my last session it all came spilling out, which is good but I’ve felt drained ever since. As @illimae said, I know that I won’t feel crappy every single day though.
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Oops. I lied. I have a wonderful dh. And a good girlfriend that says I can go to her. She thinks she understands cause she saw a sister and other friends through cancer. She gets how it could be on your mind nonstop. But she doesn't always get me when she asked if I was ready to give up and quit treating if the Dr says IV chemo. Bur if ineed to talk she will listen and offer suggestions of what to ask Dr etc. Don't think she'd physically help 20 minutes away.
I have a need to talk about it. Dh gets tired of hearing it but he's pretty good usually. We worry about who's gonna go first. Who knew life could be so hard? And in this day and age.
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gailmary - there is a Zoom group for caregivers that meets every other Tuesday at 4pm EST. My husband “attends”. Maybe your husband would like to “drop by”.
shanagirl - as others have said, we are here for you. Sorry you are having a difficult time. I know it can be hard, especially since your diagnosis is fairly new. Meds have changed a lot since 2009. As Illimae said, many of us “don’t always feel sick.” I was diagnosed deNovo in Feb. 2021, started Letrozole immediately and have been on Verzenio since March 2021. I have been doing great…NED for over one year and makers well within normal/standard range in only a few months after starting treatment. I never experienced any diarrhea from the Verzenio which I attribute to drinking lots of water, taking a high concentration of probiotics, and watching what I eat (no refined sugar or foods that turn to sugar). From the beginning I said I was “Going to Beat This” and have kept a very positive attitude. I truly believe that negative thoughts and stress is what the cancer feeds on and I am not going to let that happen. I also believe that there are so many new drugs and more to come and that if and when Verzenio is no longer working for me, there will be something else that will. Hearing that there are women, even some on the boards and on the Zoom calls who have been MBC for over 10 or 15 years is enough to give me all the encouragement that I will be able to say that one day too.0 -
Shanagirl- like you I was behind and had some catching up to do. I second what everyone else here has said. Don't ever feel like you are bringing anyone down by simply being honest. I have found this group gets it in a way others sometimes can't. In your pocket with the pins and needles feeling in your feet. I get that a lot, especially at night and am up pacing with it frequently. It does help me to run hot water on them and then I usually put Voltaren gel on after that and cover them with socks. It doesn't always take it away but can calm them enough to let me sleep sometimes.
Hello to the rest of the living room! I was offline for a bit visiting with my parents and my uncle who lives in Phoenix. He came up for my dad's 74th birthday and it was so great to see him. My dad hasn't looked that happy in a while which was awesome. It made me homesick for my family in Arizona a little bit. I'm back at work and that has been a challenge. My back is better but got sore within a few hours into my shift so we'll see how it goes. I've also been fighting a dry cough and chest tightness going on a month now which has not helped my energy levels. I do see my MO and have a CT at the end of the month so I am in hopes to get some insight into some of this soon.
There's so much to comment on! Know that I am thinking of the group frequently and in pockets for all who need it. ❤️
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still thinking of Sadie…. Hello ladies. Shana~ please know we really want you to know that dumping your feelings here is why we are all here. To support snd listen to each other and know we really do understand what you’re feeling going through this. Although we may be sad with you. We’d always want go try to help.
hope everyone else is hanging in there. Trying to sleep again. I have jumpy legs going on. Soo annoying. What an odd feeling. Goodnight dear ladies.0 -
Going to beat this,
I'm glad to hear there is a support group for caregivers. Mine wouldn't consider it. He's pretty good usually. We just have many other stresses in our lives.
Depression isn't just coming from cancer. I feel encouraged that I have some time yet. We're feeling our age and a lack of estrogen for years. An autistic daughter and her annoying friend and our bipolar fella friend. And the state of our world, etc. Then there is SE from meds for SE. The list goes on.
Yet I feel blessed,how can I not be happy about that?
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Hi ladies,
First off Shanagirl, don't you ever apologize for seeking support and letting yourself express the hell that is cancer. We are here for each other, and as everyone already stated so eloquently (sp?), love you and share in your trials and tribulations. It's not easy for some to let their emotions out and when you feel overwhelmed, we are here to prop you up. I've learned that sometimes I have to find better moments, if I can't find better days. And then comes defiance when I do find a better day. I'm new to this MBC diagnosis, too, but received a bit of resiliency courtesy of 22 yrs. of MS.
Now I can't begin to thank each and every one of you for filling my heart and pocket with well wishes. I could have used some of those cookies and candies along the way. Wasn't allowed to eat or drink after midnight, as I didn't know if I'd need surgery or not. Here's the low down.
We drove to Daytona at 6:45 a.m. Checked in at 7:15 a.m. It was absolutely heart rendering the number of people that I encountered in the ER waiting room. Stacked wall to wall, some vomiting some in terrible pain. The triage nurse, Tim, chatted with us as "we seemed nice and patient". Turns out we needed every bit of that patience. They took blood and returned me to the waiting area. It was about 65 degrees, so many, including me, needed warm blankets. I had a massive headache and was dehydrated and hungry. I was not called back until 6 p.m! They did not have a room available. Not enough nurses or beds. They made a makeshift in the hallway of the ER and a surgeon, GP and nurse attended to me. They apologized for time and situation and proceeded to have me brace myself sitting up on the edge of the cot, as they used 5 shots of lidocaine. OUCH! They made a small incision and used a forceps to pry my ribs apart. They then pulled out a couplet or disc, and then the rest of the catheter tubing. They glued my incision area. I had to wait for an xray to make sure the lung did not collapse and left at 7:05 p.m. Got a sandwich from hospital cafe and water, finally. Today chest and abdomen area is swollen. Incision area is sore, red and I think a small hematoma, but the damn thing is OUT! Turns out the last two ER visits, the staff did not know what they were doing trying to pull the tube out. In this case the surgeon had worked with Pleurex catheters before. It only took 8 minutes from shots to removal. What a story.
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@irishlove I’m glad you got that stupid thing out!
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Shanagirl - I was a total physical mess at diagnosis and it took about 7 or 8 months to really turn the mental and physical corner and stabilize with the drugs and the situation. Living with Stage IV really is like riding the waves - you are ok for a while, then maybe get progression or another situation happening and dip into the trough for a bit, but inevitably you will come back on top of the next wave for a while. Doesn't mean we cant all have our days of frustration and feeling down, though, if you didn't have those you would be some sort of superhuman psycho probably :)
Cookie - Congrats on stable!
Dirt update - we have a terrible doorbell and the worlds longest flat from the front door to the garden, so DPD did a buzz in dash at 5pm on the Saturday of the hottest day of the year so yeah, no dirt yet. Hubs seems really invested in this planting thing; we have our cats and new unofficial foster cat Leo (who hangs in our yard because he lives in an apartment block and doesn't have one -hes pretty chill though so no biggie) to nurture, but we got some plant food to perk up some tired looking trees/plants and that seems to have lit a fire under him to nurture MORE. He was upset enough to go looking for the DPD van lol.
Mid-80s here and we got the fans going, looking like sweet and spicy cold soba noodle, veg and baked tofu tonight. I dont eat a lot of tofu, but sometimes I really really want some.
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Irishlove
A day of torture and 8 minutes of hell, but you prevailed! Brava! I logged in several times yesterday hoping to see your update post and I'm so happy for you that it's over.
May the healing be swift and trouble free.
Sondraf
Love "The Saga of the Soil". Can't wait for updates on how your garden is progressing. I think I've mentioned my sadness at downsizing from a large property with many perennial beds that I created and nurtured for 40 years to a townhouse with a tiny greenspace, so I'm living vicariously through your garden story. 😊
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Irish - what endurance you have! So glad the procedure was quick and successful. But all that time in the ER. How awful. It brings back memories of my trip to the ER during covid. After assessment by triage nurse, spent 18 hours waiting to get a room. Then spent 5 days in the ER before getting a room on the regular floor. Hope we never see those days again.
Shana - I echo all the other responses in telling you that we’re here for the good and the bad. We get it. So never a need to apologize.
Woke up this am to blessed rain. What an unprecedented bout of drought in the Great Lakes region. Almost 3 weeks!
Finally got a Mychart response from my MO regarding the small pleural effusion on my CT. She assured me it was not progression and that we’ll go over everything at my appointment 7/5. I also plan to ask about the possibility of getting a port. I’m so tired of being a pin cushion.
Hugs to all of you, extra ones for those struggling….🤗🤗🤗🤗🤗
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Hello all. I am reading along. I think of posting responses to each of you, but then I just get overloaded and cannot seem to do it. I hope that makes sense.
I have my scans/labs/doc visit/xgeva day tomorrow (Monday). I think of the what ifs, if I have progression. I have been thinking about what I want to suggest as my next line of therapy. I hope I remain stable for the next 4 months (we are doing 4-month scanning), but I know at some point I will have progression. I have side effects from my current treatment- Lynparza- but they are muted: occasional mouth sore, GI upsets/unpredictability, the fatigue is the worst of the side effects, but it could be so much worse. I dread that time.
I check in here a lot. I think of you all. And hate to read of struggles. But this is a safe place. My family/friends are just not there for me. In fact, I lost a friend the other day— long story—, not to death, but we parted ways. I think that my illness factored into the situation. I am not going into it now. I appreciate all of you.
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Irish Sooooo glad that is out,ugh I'm sorry it was such a production! Happy that you wound up in capable hands and I hope you never have to experience anything like that again. Rest up I'm sure you are sore today, sending healing wishes your way today.
emac Sounds like you had a wonderful visit ,glad you were able to travel. Hope you are able to enjoy your return to work. I'm sure your coworkers are happy to have you back.
sondraf Enjoy the tofu I've actually never tried it,maybe in the near future. Ha the dirt saga continues well I'm sure the old trees and shrubs are enjoying the nurturing. Stay cool….
Hi to all, still praying for Pat daily hoping she is ok. Well wishes and peace to everyone this Sunday.
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One of those insomnia nights for me, awake since 2:30am, ugh. Going over and over again in my mind the pros and cons of leaving my job. Sent my MO a message, asking for a phone call this week to talk about medical leave, I'm hoping we don't have to wait for progression for her to approve it. I'm just so tired, and sad, and mad. I think there will be unknown-to-me benefits of not working, I think there might be some relief, even. It's kind of amusing that at times I still feel in shock that I have this diagnosis. Like, wait, what?!?
I do want to have more time to visit with friends who don't live locally, to help my Mom move and not have to try to squeeze it in on my days off, to sleep in later than 6:30 when I'm still tired... and I believe I'll be upset with myself if I keep working until I get even sicker. I know I am blessed with a home that my husband paid off before he passed, and a good long term disability plan from my employer. I know others can't even consider not working.
Cookie, great scan news! Goldens, good to hear your MO doesn't think the effusion is progression. Irish, what a heck of a lot you've been through, glad that thing is out, finally. Emac, sounds like a wonderful family visit, love that. Candy, thinking of you and sending love.
Thinking of everyone, thanks for being here together
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Checking in on my weekly visit to Mel's
Cookie- yay for stable scans
Irish- what a terrible ordeal to get that catheter out but you took the bull by the horns and got it done. Now rest and heal quickly
Shanagirl- everything has been said about how we are all in this together . I have been on Ibrance for 4 years. This cancer crap is like a roller coaster. Some days are good and others not so good. You make the most of the good ones and learn to deal with the bad the best you can.
Emac- so glad you had a good time with family .
Candy- in your pocket for scans and sending good vibes for continued stable results.
Hello Mel,Mara,Goldens,Seeq, Sondra,Mae and everyone else I have missed. Still worried about Pat.
Was supposed to head into town to take special son out for the afternoon but my bowels are doing tricks on me so I figured it was safer to stay home. Will try again tomorrow
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Good morning my Sistas. I love you all for the kind and loving words of encouragement.I know how much everyone here gets each and every feelings each other is experiencing with this horrible disease. ♥️Thank you all!💗
A lot of what I’ve felt recently was that I have been still trying to portray the strong positive girl my friends and family have always known. I couldn’t allow them to see that this diagnosis threw me for a loop. I was girl who overcame Stage III Cancer for 13 years NED, was strong enough to ride and jump horses, volunteered fostering incoming Great Dane orphans for Great Dane Rescue, did my own landscaping gardens on a large property with a large home 5 bedrooms 4 baths, and always kept it immaculately clean, cooked for 5 kids after, and went out on date night with DH and having the energy to do all of these together in one day. I have had such a wonderful life with my family & friends.…
I think I’ve been grieving the person I used to be, and finding it hard to have all the physical pain & limitations of this disease and my age. I am old enough to know that each bad day will pass and each day is always a new day. ☀️😉 I just turned 74 in April😊👍
💕Barb0 -
@irishlove What an ordeal! It sucks that you had to endure that experience but it’s behind you now and I hope you heal fast.
@goldensrbest Im glad your doctor could put your mind at ease.
@candy-678 It’s so hard to lose a friend. Im sorry you are going through this. I’m still mourning the loss of a friend from last fall. She was never there for me emotionally due to her own head trips but I still enjoyed her company and looked past her quirks. After all, we all have quirks. Nonetheless the parting of ways still hurts and I still miss her.
@eleanora I used to maintain acreage with very large gardens. It was my passion for decades until we had to sell to move into a house requiring less maintenance. I still have lovely (but small) gardens that are maintained mostly through HOA dues. But because I’m such perfectionist, I like to get out and clean up dead leaves and dropped palm fronds or prune a wayward stem here and there. I got out in the garden this morning before it got too hot. I almost passed out. Never did get my 10 pak of annuals planted. So much for gardening.
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@irishlove - so glad to hear that you and your catheter are no longer one. 🤗 Did they say if maybe an ice pack would help with the swelling?
@candy-678 - good luck with your scans tomorrow. Try to think about happy things when you are in the machine or do as I do and take a nap listening to music (if they offer to play some). A very wise doctor always told us on the Zoom meet-up “Try not to think of the what ifs. They may never happen and you would have worried for nothing.” Again, good luck.0 -
thinking of you Candy. I know how you feel. I know how it all feels. Irish~ glad your ordeal is done. What a shit stew you had. I hope everyone can be at least ok today. I’m heading in for a nap. My mouth had been a bugger. But onward we go. Hugs and pocket duty for scans and appointments! Love to all. 💕 💕
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