May 3, 2021 08:54PM dutchiris wrote:
Hey BevJen, great to see you!
Topics here are started by members with a Stage IV/Metastatic Breast Cancer diagnosis, but open to all members to contribute to discussions. Please note that there is a separate forum, Stage IV/Metastatic Breast Cancer ONLY, where topics are open only to those members.
Posted on: Jul 6, 2017 08:38PM - edited Oct 28, 2019 12:42PM by Micmel
As I go through this forced path I have been thrown down, I have come to realize the love I have always had for my husband was strong. He is amazing and I love him with my very soul and entire heart. Never would I ever imagine the thought of dying and him being alone. Then the worst part hit me!! I can't seem to shake the horrible sorrow of thinking of another woman taking my place in his life and his heart, and if I Am honest his bed. He is my best friend and the love of my life, I would never need another for any reason. He makes my life complete, and then this happens. How do I process that I most likely won't be the one growing old on the porch that we have talked about, how do I process, someone else sitting in that chair? I hate this trajectory path I've been spun onto, and everyday I feel grief and deep sorrow. How do I live everyday knowing in the back of my mind, I feel like a place holder, for another woman who will be stepping into my life when I die of this horrible disease, more sooner than later. Why would I even want to take any medicines or treatments, when the answer is pretty obviously in front of my face.? Why do we fight so hard for something we cannot control ? Why do we hurt so badly thinking about letting go, or giving up? It's a four letter word that holds so much power. That word is LOVE..... If you have ever felt this way. Share with me, because I understand, I feel this way everyday. I also don't know what to do with the sadness of loss or how to process the process of dying. However slow or fast it may be. Please share your love stories with me, how did you meet? How long together? I want to know your stories, everyone has their person. Everyone loves.....tell me about your family, your friends, your life too, as if this was your living room. ♥️
We are team FU cancer (Named by Parry, our sweet sister) and this is our Lol pub and living room. Welcome, put your feet up and just be you!
Posts 20941 - 20970 (21,119 total)
May 3, 2021 08:54PM dutchiris wrote:
Hey BevJen, great to see you!
May 3, 2021 09:08PM mara51506 wrote:
Yes Bevjen, sending healing thoughts your way and hoping all the surgery restores you to where you were before.
May 3, 2021 09:23PM Rosie24 wrote:
So great to hear from you, BevJen! I’m so glad to you’re getting the intensive PT to get your functionality back. It sounds like you’re ready for the hard work. There are so many of us here and on other threads pulling for you!
May 3, 2021 09:43PM - edited May 3, 2021 09:43PM by Micmel
my god everything we go through. Cancer is rotten to the core. I'm thinking of you all
May 3, 2021 09:51PM Tanya_Djamila wrote:
BevJen thanks for checking in. Glad to hear you’re on the mend.
Candy hope your kidney stone passes easily.
Mara are you feeling any better?
Booboo it was nice to hear that your DH is taking good care of you.
Mae your procedure is Friday? Pocket duty.
My PET results are stable. Grateful fir that. waving hello to all.
May 3, 2021 10:22PM jhl wrote:
I am so happy you have checked in. Rest well but work hard in PT/OT. It will be a bit of a struggle but so worth it when you can get back walking and doing your daily activities.
You will be in my thoughts,
May 4, 2021 12:34AM runor wrote:
Mara - I looked around today at all the budding green and pollen, POLLEN!! ACHOO! Could you be a little wonky because you have a titch of allergies? I find when my eyes are itchy and nose runny and I have that dry, tickly non-productive intermittent cough and sometimes sneeze (all the things that will get you shot if you do them in public theses days, you're better off to shout BOMB! in the grocery store than sneeze, for pete's sake!) I find I just feel dragged out and like I need a nap. I never used to have allergies but I do now. Maybe try an antihistamine instead of headache meds and see if it makes a difference. Hope you get your pep back soon.
BooBoo - the origin of my name is a well guarded secret. Part of it is an online name I have used elsewhere combined with my actual initials. See...top secret!
Candy - kidney stones? I hope this is not the case because, not fun. Hope you feel better soon.
Mae - gotta be honest, those Frankenstein bolts to the head freaked me out, although Mr. Frank and Stein had them in his neck, if I am correct. Still. Can't they just slap a big slab of duc tape across your noggin and secure you that way? I would lose my shit. I think you better have them hook that watermelon vodka to your IV and then....shortly you won't give a shit about anything! In all seriousness, I am sad that anyone has to do this. Also about your low expectations, I have to disagree. Finding pleasure in the small and quiet, finding joy in the simple and often overlooked is not a low expectation. It's attention to the fragments of life that flow by while most of us aren't looking. It's attention to details, tiny and subtle, that bring a smile. Delight, grateful glee, this is the result of a discerning eye that sees the fairies dancing in the dust motes. Most assuredly not low expectations but the gift of those who can see magic.
Sondra - pain is exhausting. Worry is exhausting. Recovering is exhausting. You have earned a nap!
Moth - I hope you are okay! And that you don't have to spend too much time thinking about it.
Bevjen - good lord! It sounds like you've been thru the wringer and I too would cry. Sometimes it's the only thing to do. I hope you power thru and get home because there's no place like home!
To everyone, waving hi and riding in the pockets!
May 4, 2021 08:00AM booboo1 wrote:
Ah Runor, now you’ve got me curious about your name. Can you give me a hint? I’m thinking the word “humor” has something to do with it.
Mae, all I can say is that you are one bad-ass woman. I had no idea....it made me cry to see what you go through. It also slapped me out of my pity-party. I am so over all of this craziness....cancer. Even the word makes me cringe. Anyway, my prayers are that you would be able to endure and then continue to enjoy your life.
BevJen, I cannot fathom how you were able to get two major procedures and be able to handle it. You are another one of the lady-gang who refuses to give up. You inspire me to work on my own recovery. Prayers for you that every day is a little easier.
May 4, 2021 08:59AM GoldensRBest wrote:
Mae - I share your philosophy. I know that despite my problems, disease and pain, there are others that have it worse. If we all threw our shoes in a big pile, I can’t think of too many who would choose someone else’s shoes. I know the trial and tribulations that are worn into the soles. There’s a saying I often go back to: the things we take for granted, someone else is praying for. When I sit back and look at my life, I’m so grateful for what I have. Wonderful family and friends, a roof over my head, daughters who want us in their lives, a husband that indulges me with 3 dogs.......and so it goes. It’s really a matter of letting peace come into your life. I wish all of you that peace, today and all the days that follow. And if you can’t find it right now, know that you are all loved by those of us sitting in Mel’s living room
May 4, 2021 09:04AM mara51506 wrote:
Tanya, yes, I am feeling better today, thank you for asking. I am glad to hear pet scans were stable.
Runor, would not surprise me if I have outdoor allergies. The herceptin also gives me an extra drippy nose as well so post nasal dip could account for the coughing. The cough is not productive so I am happy about that. Hope you are feeling better after your good news too.
It is pretty gray and rainy. I did go for a half hour walk, the rain did not really start until halfway through so got pretty wet. Drying my hoodie and will dry my shoes later. Feel pretty good otherwise.
May 4, 2021 09:12AM illimae wrote:
Runor, I did lose my shit the first time a had gamma knife, so much cussing and crying, lol. I’m amazed at what I and others have dealt with repeatedly just to stay alive.
Slight amendment to my low expectations statement. Definitely more specific to people but for life in general, I completely agree that being grateful for the little things is key.
Now I’m gonna go appreciate some coffee with hazelnut creamer. Good morning all 😁
May 4, 2021 09:29AM booboo1 wrote:
So beautiful what you wrote. Especially, “the things we take for granted, someone else is praying for.” I think I am guilty of taking many things for granted, but I’m trying to stop and smell the roses.
I meant to also comment on your stable PET scan. So happy for you my dear.
Thinking of you. Hoping every day is a little better.
May 4, 2021 10:31AM RosieRed wrote:
When I was a kid I had to go to a specialized orthopedic doctor for my scoliosis. I would get down on myself about my condition and my mom used to say all the time that there are people out there that have it worse than I did. I remember one time we were sitting in the waiting area to see the doctor when in walked in a kid a little younger than me that looked as if she had a foot for a hand. My mom quietly pointed her out to me and it brought home her point. So I’ve lived most of my life being grateful for having what I have because it could be worse. Now being diagnosed with MBC, it’s gotten harder to be grateful. But being newly diagnosed and not feeling any pain, besides the monthly injections and port access, I’m grateful for my life now because I know things will eventually get worse health wise.
In reading the posts here and other topics, I’m amazed at the strength and endurance everyone has. All the scans and tests and treatments and appointments. Oh my! Hugs to all of you for all you go through.
May 4, 2021 12:08PM moth wrote:
Tanya, yay!! stable!
Bev - omg what a hard time you've been having. Glad you're in a better fitted facility and I hope the rehab is going well. Honestly, rehab is such hard work. Sending you extra virtual energy & best wishes
my bone scan got moved from Wed to today but at a different hospital. have to hustle myself to get out the door on time.
mae & goldens & rosiered - good thoughts about how to approach our difficult days.
May 4, 2021 01:13PM Chicagoan wrote:
BevJen and Laurie-Sending prayers for strength and energy as you both build up your strength.
Mara-Glad you are feeling better.
May 4, 2021 01:18PM mara51506 wrote:
I take time to enjoy the little things that give me joy, walking, doing laundry and today watching Star wars The Bad Batch on Disney plus. May the Fourth be with you.
May 4, 2021 02:16PM runor wrote:
RosieRed, I have 'issues' (not sure how to word that) with the idea that people need to feel gratitude in spite of being handed a shit sandwich. I think a clear distinction must be made, for one's own sanity. You are allowed, permitted, perfectly justified in being really, really pissed off and horrified over MBC. Under NO circumstances should you ever feel that you need to minimize it, excuse it, or gloss over it. It's a shit sandwich. No way around that.
Now to Mae's point of having low expectations or, to see the divine in the details, I picture this scene. You are in a beautiful restaurant. The lighting is low, the music is sublime and soft, you are wearing a lovely gown. The other diners are decked out in their finery, having quiet conversation over candlelight. The atmosphere is surreal in how perfect it is. A waiter in crisp white shirt pours you bubbly wine that is perfect , the tiny beads of tang burst on your tongue. Another waiter sets a silver domed tray on the perfectly crisp white linen tablecloth. The candlelight glints off the cool metal cover and sparkles in your bubbling wine. He lifts the dome to reveal..... a shit sandwich.
There is no way to avoid this cold, hard, stinking reality. Those (like me) who are short on composure and wisdom will leap up and scream I DEMAND TO SEE THE MANAGER THIS INSTANT! But the wise, the dignified, those who want to be in the joy and beauty, will set the lid back over the stinking sandwich, ignore it for a time, and soak in everything else about the scene that is utterly perfect. You may sip the wine. Enjoy the murmured, soft conversation around you . You may appreciate how awesome you look in your beautiful gown, the colour and fit of which is perfect for you. You may be seated across from someone you love and who has loved you a long time, a spouse, a friend, a child. When it's time to go home yes, you have to take your shit sandwich in a doggy bag and you have to pay for it. You will have to deal with it later. Later. Another day. It may stink up the car on the way home. But the beauty that you have been in, the peace, the moment...that is as real and solid and as much yours to enjoy as the shit sandwich. So take the good. And you do not have to say thank you to anyone for the shit sandwich. You will deal with it soon enough, you are not in denial about it, but in this moment it takes a back seat to every detail you can soak in. Gratitude for the good does NOT mean gratitude for the shit sandwich. These are separate issues and we never need to feel lucky that our shit sandwich is lesser than someone else's. But we do need to feel gratitude when we find ourselves in those moments that are wonderful. We need to pay attention.
I need to take my own advice.
May 4, 2021 03:15PM SeeQ wrote:
BevJen, so good to hear from you. What a tough time you're having, but it seems like you have a handle on it now. I'm glad they got you in the right place - what the hell were they thinking?
Tanya - yay! for stable scans
Moth - good luck on your bone scan today
Booboo - glad to hear you and your hubby are doing better. I hope you feel more like your old self once you get past rehab.
Mara, glad you feel better. If you start to feel worse, at all, please go see a doc. I think we're entitled to a little more abundance of caution.
Mae! You are so casual about what looks like a really big deal. I get what you mean about lowering expectations. There have been times when I've been so frustrated with someone and resolved it by realizing I just needed to change my expectations.
I know there are people I should be mentioning specifically. I have ups and downs about when/ how I post, and I don't keep up as well as I should. Just know that I am thinking of you all. Waving all around the living room!
May 4, 2021 06:03PM Karenfizedbo15 wrote:
So some of you may remember my story about a radiologist sending me home without treatment for a massive pleural effusion, but the ‘ underling’ staff overriding them to get me the treatment I needed? After chatting with my team I decided to put in a formal complaint, based around protocols and that the radiologist should have consulted with my team before making any decisions on my care.....much though I wanted to push for disciplinary action I’ve kept it positive and my team are actually on my side as I’ve emphasised how good they are. Sometimes it needs an external person in our situation to get things moving.
Put the complaint in yesterday and got a response today...unheard of for the NHS. The complaints dept have bypassed the initial complaint stage 1 and initiated a formal investigation at stage 2 with an immediate apology.
I had already said an apology would not suffice..., we need the protocols to change....plus a lot more, like the attitude! We’ll see how it goes!
May 4, 2021 06:48PM illimae wrote:
SeeQ, it’s a big deal but I’ve been through it a few times now. As much hate the frame placement process, it’s kind of just another hurdle to jump in MBC life.
Runor, I find the shit sandwich hilariously accurate. So, I’m gonna choke down my bite and move on to dessert.
Also, thank you everyone in advance for the pocket duty Friday, I’ll update from the hospital, where I’ll be enjoying a pretty decent inpatient breakfast :)
May 4, 2021 06:54PM mara51506 wrote:
Karen, I am glad your complaint is going further up the food chain at the NHS. Not sure how anyone could think that a pleural effusion should not be treated as you could essentially drown if left without treatment.
May 4, 2021 08:27PM Kittykat9876 wrote:
Hello everyone, good to hear that Bevjen and Boobo are on the road to recovery, I remember that it took me around 6 weeks to ditch the crutches after I had the rod placed in my femur. In your pocket for sure on Friday Mae, wishing you all the wry best. Candy, I hope you're recovering well from your biopsy and that you get some answers soon. Yay on a good scan Tanya. Mara, good to hear you're feeling better and back out walking. Runor, great analogy, you've hit the nail right on the head.
I've got chemo today, blah, at least navelbine is a quick infusion. On a lighter note, I bought myself a brand new car on the weekend, I get it in 3 weeks, I love my present car but the stick shift is becoming too difficult to drive. Anyway, waving hi to everyone, in the pocket for anyone who needs it. xxx
May 4, 2021 09:43PM Micmel wrote:
kitty ~ congratulations on the new car. I hope you're feeling ok after chemo. I am sending hugs.
BooBoo ~ on my mind.
Mae~ definite pocket duty for Friday.
Bev jen~ thinking of you.
Karen~ way to speak up. I agree completely!
Mara~ hello dear. I enjoy doing laundry also.
Candy ~ didn't see her. Today.
Tanya~ Hell Yeah!! Congratulations! 💐
Runor~ I enjoy so much to read your posts. It's like a short story I get lost in. I've had some of the shit sandwich.
Waving to Rosie red. Good to see you.
Hello goldens~ emac. Jensgothis , I write anyne ive missed I'll be back.
May 4, 2021 09:55PM Rosie24 wrote:
Candy, are you still thinking you have a kidney stone? I hope it’s not too terrible if it is, but I know DH was pretty miserable some of the time he had his. Thinking of you.
May 5, 2021 02:54AM runor wrote:
Karen - I admire you for speaking up. I think people need to. I don't think one needs to freak out and be a lunatic. But firmly standing your ground and saying an apology is not enough is perfect. Good for you!
Mae - you're going to get a decent breakfast? In a hospital? Are you serious? Hospital food locally is notorious for being utterly repulsive. Anyone stuck in hospital for any time has food smuggled in by visitors. Pretty hard during covid when no one is allowed visitors. When you said you would be having a decent breakfast I thought wow, Mae must be on the GOOD drugs! I travel with you for this awful proceduer and look forward to photos of this decent hospital food which, frankly, I do not believe exists.
May 5, 2021 07:05AM - edited May 5, 2021 07:22AM by dutchiris
The FISH test showed my cancer to be her2 negative. My bone mets were originally ER+, PR-, and her2-. Now with the mets to my ovaries, it is ER-, PR+, and her2-. My MO had said if the FISH test was negative I should started Xeloda. I am waiting to actually here from her about how we begin. I am worried I will have to give up things I enjoy. Anyone know? I will post on the Xeloda thread too.
I wanted to edited my post to correct my spelling mistake but it tries to delete everything so I give up
May 5, 2021 08:36AM GoldensRBest wrote:
Runor - your writing needs to be made into a collection and published. Poignant and acerbic at the same time. I either pee myself or spit out coffee (if it’s morning) or wine if it’s late afternoon. A real talent with words.
May 5, 2021 09:00AM mara51506 wrote:
Nothing much going on here, combo of housework and walking. One more half hour walk before breakfast, not feeling like carting cat litter home so order from the skip the dishes. It saves me the hassle. I know there are charges, but sometimes it is worth the convenience factor of not have to stagger home with it. I also cannot weight and count on shopping trip with older DB either. Amazon is too pricey too. I was good and did not add any extra things to it. I did get a chocolate bar sample in my mail as I belong to a sample membership.
Runor, your writings are both poignant and funny with a bit of sarcasm and self deprecation. I feel the same as the others above.
Mel hoping that things are evening out a little bit day to day. Another person at the hospital complemented me when I walked in to register for my echo before I had to change the mask to one of theirs. I have amassed quite a few surgical masks along the way as when I get home I spray them with a rubbing alcohol mister to disinfect without soaking the whole thing. I like to wear them 3 times before I discard them.
May 5, 2021 10:47AM 50sgirl wrote:
Candy, I hope you are okay. It is unusual for you to be silent so long. I hope your suspected kidney stone has resolved and not turned into something more serious or very painful.
Hugs and prayers from, Lynne
May 5, 2021 11:19AM dutchiris wrote:
Candy, I share the concerns others are sharing. I hope you are ok.