Does anyone else just feel like giving up? Two weeks ago I told God I'm tired of this with tiredness and scans and nausea off and on. Plus monthly trips to hospital for blood draws. Sometimes a lot of times really I get weird feelings of shakiness and not grounded or something that sense of not being here. I also have emphysema so at times I have trouble breathing. Am I the only one that is almost to tired to shower or bathe? It's a struggle to keep up. I tried a medication for depression and it seemed to make it worse. Well I didn't want a pity party just needed to get others opinions of their feelings or if I'm the only one that has these feelings? Dr. says even if the cancer is gone I will have to continue with the Ibrance and scans and blood draws so it sounds like this is all a life long continuation.
The Artist: Does anyone else just feel... - SHARE Metastatic ...
The Artist
Hi there
Sorry you’re feeling down in the dumps...I can assure you you’re not alone
I felt like this when I had to change my meds when Ibrance stopped working...I read the side effects and thought ‘what’s the bloody point’ as this will eventually stop working...then what?.. chemo?... not a chance
I’ve just had an iron infusion yesterday as I’m anaemic again...last week I walked down to my local shops...I live on a hill and I felt so weak and breathless walking back and actually didn’t think I wouldn’t make it and it scared me...I walked the same way today and felt weak again but hope the iron will kick in soon...do you think an iron boost might help you?... I would ask about it
I went the antidepressant route shortly after my diagnosis but like you...I felt terrible..nausea and feeling peculiar so I won’t take them now
I agree that life revolves around hospital appointments and knowing there’s no way it will never end...however I was talking to someone whose hubby is waiting for a kidney transplant and he has to go for dialysis three times a week...that stopped me feeling sorry for myself...I know it can’t change anything for us but it made me think
Don’t give up
Barb xx
I'm sorry this damn disease takes such a toll. Those of us on Oral Chemo don't yet know what its like to go through more. I feel for you and hope you get you get some relief.
Hi! I’ve known both oral and IV chemo. This Ibrance/Letrozole treatment is worst than the IV in terms of side effects
Hi!
I'm so sorry you're feeling this way and I empathize.
While I haven't reached this point as I'm only in month 5 of Ibrance/Femara treatment,
I do have fatigue and frequent blood draws due to low wbcs and also become stressed nearing the 3 month scans. It's no picnic for many of us even if we are taking chemo in pill form VS infusion.
I also have a paralyzed diaphragm so breathing is hard for me too at times. I understand where you're coming from but we can't give up. Most of us will be on these drugs forever, as long as they're doing their job of keeping us alive. That's what we want, right? I know it seems a high price to pay but I personally think it's worth it. I'm a fighter and pissed the cancer has come back after 10 years and, for the moment at least, am going to do all I can to maintain a stress-free, healthy mind and body. I believe in their connection and what we think and say also affect our health.
Since diagnosis, I've spent a lot of time researching ways of improving my life: spiritually as well. I've begun meditation, am starting senior classes at a local gym, doing acupuncture which helped me tremendously with nausea, hot flashes, energy and dry mouth. You might consider trying this if available in your area. I've also just begun a plant-based food plan and am already feeling the benefits of avoiding red meat and a lot of yummy cheeses. Drinking as much water as possible (supposed to be 90 ounces daily!) to flush my system of the drugs and it also helps in my ongoing desire to lose weight.
Do you have a good friend or a partner who can help through this? This chronic disease we're fighting would be hard to go through without a support system. We're of course here for you but hopefully you have others who are not "virtual" as well.
Wishing you all the best and take care!
Red xx
Are you on oxygen? With a paralyzed diaphragm what do they do to help you breathe?
No, I’m not. They test my index finger for oxygen absorption and it’s around 92%. I’ve been told an oxygen tank is only issued if it’s 80% or below. Makes walking and talking difficult and other activities as well. I’m resigned there’s nothing to be done so pace myself and besides I’m more concerned about surviving the MBC.
Thanks for your interest and take care!
Red
80% is not much. I cant believe they don't do more than that for you. Have you ever tried going to a pulmonary dr,? Maybe they can give you an inhaler.
Oh yes, I've seen 3 pulmonary specialists, including two from Stanford Unviersity Hospital (which is one of the best in CA). They all said the same thing. Nothing to be done but learn to live with it.
Thanks for your concern.
All best,
Red
Ask about pulmonary rehabilitation. It's a bit like physical therapy, but specific for those of us with lung/breathing issues. I have something called interstitial lung disease, ILD, which my pulmonologist described as being like gunk between the air sacs. It was a side effect of Ibrance and appears to be permanent for me. Anyway, the rehab helped me quite a bit. It was a very friendly happy place, too. I was actually one of the healthiest people there! Most had COPD or other serious lung conditions, two were waiting for transplants. Medicare covered it. I get winded in the morning just by showering and dressing! I have to rest for awhile after that.
Thank you so much! It was offered to me after my dx but the facility is more than 1/2 hr drive and I’d have to go 3 x per wk for 6-8 weeks. I just don’t have the energy most days to make the round trip, though I know it would help.
I’m glad to hear it worked for you.
Do you think it’s too late more than a year post diagnosis? Once my wbc count is elevated again I may reconsider for future.
Thanks again and all best regards!
Red
It is just over two years since my diagnosis of Stage IV Breast cancer with numerous Mets to my bones. I was never even diagnosed with great cancer until I had a bone biopsy to my hip. It through me for a loop and I have never recovered. I have been taking Ibrance and Letrozole since diagnosis and I always had to be off of it three weeks at a time to get my neutrophils back up. My bone pain has been hard to control and I had to have a complete hip replacement due to the damage from the cancer. I went to my doctor and Er so many times before with excruciating pain and the fibbed never off saying it was nothing. Even an ortho doc said it was nerve related. He wouldn’t send me for a ct scan or mri. Finally my neurologist felt sorry for me and sent me for the mri and found out it was cancer. I have so much anger over this. Then there was a mix up getting my Ibrance to me and I waited two months for it to get straightened out. During this time I was sure I was dying. The last two years has been a constant struggle with pain management and loss ad mobility. I try not to feel sorry for myself but this time of year is bad with shorter days. It messes with my depression. I’m with you, I want to give up all this foolishness and side effects, appointments and scans-always waiting for the other shoe to drop. This group has kept me going some days. Reading I’m not alone and not the only one out of Breath and tired. I hope tomorrow is a little brighter for you and sorry for hijacking your post.
Hi! No! You are definitely not the only one ready to give up. I myself too feel like if I have to live being weak, tired, no appetite, no zest for life, I might as well be gone. I’ve been on Ibrance/Letrozole for 2 months. I will go one more round. Then comes my scans. If my lesions in my lungs and liver haven’t changed, I’m getting off all treatments. I can’t take it anymore. So, sister.... I feel you 💕
I don’t know what to say except I understand. am going thru a setback and don’t know how the treatment worked yet except to say I can now eat again, but there were days when I was so sick of the awful fatigue, vomiting and inability to eat and painful swallowing, I said to myself I can’t live life like this. And you having emphysema on top of this, no wonder you feel so defeated. Antidepressants won’t make the cancer go away, but can help. There are so many, you might want to try again? Is there a palliative care doc at your facility who can address the fatigue and breathing? Do you have support at home? I’ve thought about what I’d do if things were just too hard. I’d definitely need therapeutic support no matter what. Do you have a therapist to talk to? You are not alone in your feelings. I hope you can get the help to feel physically better. Please let your doctor know how you feel. You can get help to sort this out. Sending a huge virtual hug. 💕
I'll bet there is not one of us who hasn't, at one point or more, shared your sense of utter defeat. Your words hit home for me, as I have days when just lying in bed late into the morning, and just reading a book or the morning newspaper or watching a movie is such a relief.
I have two rescue dogs and often feel guilty not getting them out for a walk every day. I see to it that they get relief in the yard every couple of hours, but the weather has been so rainy in Seattle for the past several weeks, and I use that as my excuse for staying in. I feel myself becoming more and more reclusive, despite friends and family in Seattle. When you look "normal," even those close to you stop asking how you're doing. I never get asked how I am doing emotionally, and I don't blame my loved ones. Sometimes, I think they are afraid to ask too many questions.
I often wonder if the occasional aches and pains are easier to deal with than the emotional struggle to accept that life will never be without scans, blood draws, and pills. It is not easy to remove oneself from this grim reality, particularly as the daily pill(s) become a daily reminder that I have metastatic cancer.
I wish I had some magical tips to offer, dear Artist, but I just wanted to offer you a note of empathy. I hear you and pray that God offers all of us, as a group and individually, reason to hope for brighter days. Love to you, Linda XXOO
God gave me this verse last week as I was going through a rough time waiting for test results. Joshua 1:9. This is my command—be strong and courageous! Do not be afraid or discouraged. For the LORD your God is with you wherever you go.”
My favorite verse. Thanks🤗
I think we all have those times when we question whether it’s worth the struggle. For me, the positives still far outweigh the negatives. I’m praying that they continue to do so for a long time to come. If your depression is the piece that makes the negatives tower over the positives, please be forthright with your oncologist and the cancer center about this. They should and can try harder to find a way to deal with it. Keeping you alive doesn’t work if you find life not worth living. I’m praying that you can find a way. Hugs, Elaine
Please hang in there. You poor thing having emphysema as well. That must be a nightmare. I re-read one of your old posts and see like me you have a supportive husband which is a blessing. Winter makes this all seem worse. Where do you live? I am sending you love and want you to know that everyone is here for you. I think you might try a different antidepressant as that really might help. Wish I could be more help x
Wow, here it is 4am (upstate New York), and I am awake and anticipating my scan next month and feeling pain and wondering if this means the meds stopped working. Will I get “the bad news “ that there is progression? I too was sent to chiropractor (Which made pain worse) and in pain for a year before de novo diagnosis of several mets in bones, there is no evidence of breast cancer tumor...except for the biopsy... no one could figure out what was wrong.
If it wasn’t for painting (Chinese brush painting), I don’t know what I’d do each day. My husband had 3 strokes the year I was “undiagnosed” and in pain. I couldn’t really help him as much as I wanted to. (In fact I was asked if my broken ribs were due to trying to support him...of course they weren’t.)
So my heart goes out to you.
We are all facing death, whether we have cancer or not, but we seem to be more aware of that fact. You’ve been dealing with this a little longer than me (I just finished the first year on meds), and I struggle to make sense of what is happening. (My husband is doing better, but can’t drive or prepare meals so there is much that I must do for the both of us.) This is not a complaint but it does make me worry about him if I get worse.
Anyway, your post touched me, so thank you. Sometimes I can’t read these posts because I just can’t handle it all. But your cry for help was so real it moved me to respond. You are not alone.
Yes sometimes i feel that way too. Its tough living with cancer on top of other medical conditions. So id say you're normal given your situation. Maybe some vitamin D If youre not already on it.
Remember this is a dull time of year when we're likely to get more down. Leaves will soon be back on branches and spring flowers will be out.
I say this whilst quietly respecting we make our own choices in life.
I hope you feel better soon xx
Totally get it. Not asking for pity, but when I was 19 I had my first knee surgery and was diagnosed with degenerative joint disease. What followed was more surgeries. 2 hip replacements, knee replacement, rods and screws holding my back together. Discs in my back that are so deteriorated they're leaking spinal fluid. I cannot tell you how long it's been since I've taken a walk and been able to enjoy it. I finally learned to deal with the pain, then diagnosed with cancer 2013. I had 12 major surgeries. Then in 2017 MBC. Yes, I totally get it. When what I'm on quits working i don't know if i want to continue this fight. It taking its toll physically and mentally. My personal relationship with Jesus gives me such joy, happiness and peace. That's the only thing that keeps me going. I want people to know that when this body gives out, that I know beyond a shadow of a doubt I'll be with him in heaven. No more pain, tears or sorrow. My mother in law fought for ten years and finally said enough. I even dread just walking through the doors of the hospital. I didn't do much to help you but got some stuff off my chest. I'll be praying for you.
As you see by the replies you are definitely not alone. I have been there also. The shakiness, staying in bed etc. I hope you can find some relief. Most important is keep asking for help to fight this. Also, most Oncology units have a support group that you can visit if you can master the strength to go. My local Cancer Society has a "visiting friend" group and will find you a friend who will visit you at home to help you through this time. They are people who have experienced what you are going through and sometimes have coping ideas. And keep in touch with us. We understand. Maybe you will find some answers here.
Cheers, June S.
You are not the only one who feels like giving up sometimes. It is a VERY HARD journey.
you mention 2 thngs that are significant:
1) fatigue, Is there a medical explanation. Have your docs addressed this specifically? Have you tried Chinese Medicine for supportive care?
2) the challenge of so many appts., I wonder if there is a way to add more enjoyment to the medical appt days. I often travel with a friend to appointments and plan something fun in addition to the medical appts. like a visit to a bookstore, cafe or bakery, a thrift shop.
I empathize with your situation.I’ve now been dealing with cancer for 17 years it started when my GP suggested I didn’t need mammogram And for some unknown reason I insisted only to discover that I had lobular cancer in the left breast the first surgery did not remove enough and although the glands were negative I had to have another surgery after which they suggested radiation when I asked the oncologist how he would protect my heart given that the cancer was very close to the mediastinum he said he would do his best I’ve been investigated whether having a double mastectomy would avoid radiationOnly to discover that in the right breast there was already evidence of cancer then everything seemed relatively fine I started having some pain in my hip the oncologist sent me to an orthopedist she said there’s absolutely nothing wrong with my hip I started having sudden losses of urine particularly when my bladder was full he sent me to see her urologist and they checked my bladder and said that everything was fine then on returning from eight months in South America I came backWith what seemed to be plantar fasciitis however the physiatrist became very suspicious And asked to review a bone scan that already been done and for me to do a new one and he suggested that there was something going on this was in the month of July I went back to see my oncologist and in November I had a bone biopsy which suggested that I had done the tests the treatment with Ibrance and letrozole started in December to be sarcastic a six month delayI changed oncologist and hospital and I’m still struggling two years on ibrance and letrozoleIs reaching the end of its effectiveness the oncologist put me on prednisone and Aromasin.. the prednisone meet me manic unable to sleep incredibly irritable I could barely stand Myself so now the prednisone is being reduced and he’s added Lyrica Which also comes with lots of side effects he recently sent me for a scan and I discovered when they called to book it that it was a head scan I was in a total state of anxiety thinking that he was looking for brain metastases subsequent to a contact with him he said it was simply part of a protocol however when I got to the scan place I learned that I was also to have a full body scan since I had to wait three weeks before I saw him I wanted the results the pivot nurse suggested that scans were boring and not terribly useful and that in fact I will see him very soon I am overwhelmed by the amount of empathy that exists in the system clearly the prednisone that I am on has affected my moodAnd I find myself more irritable if not to say in raged which is unusual for me however I will not accept chemotherapy And a part of me is tired of dealing with joint pain headaches mouth sores tiredness etc. part of me wishes that this thing that is hanging over my head with simply fall in that I would get really sick and that there would be an end .Fortunately I have access to a therapist on a weekly basis someone that has known me for a long time it is the space where I can see whatever is on my mind because I continue to work I have told her a few people about my situation and of course I look good enough it doesn’t show One of the main pleasures in my life at this point is my dog who As I am writing this is cuddled with me
I also find the multiple appointments quite an infringement on life in the past month I’ve had a CT scan and bone scan pet scan and a few days ago a doctors appointment I arrived at the hospital at 2:15 and I left at 6 PM ....that this is far from being an usual however what can I say other than I wish they could get their shit together and get organized because this is not unusual eventI think of a good friend of mine a physician who died recently who called cancer patients ladies in waiting I think she was dead on
I wish I were religious and believe in God I do envy people who are however I am 100% atheist
I don't know if this will make you better but I have been stage iv for two years now and the last few months have been harder and harder for me. I knew from beginning I would be in treatment for life, but somehow it seemed to me a year ago that eventually I would be able to stop. I think it hit me this year that it never will. I have been crying more than usual, feeling hopeless and the future looks empty. Now, I am starting to feel pain.
Sometimes a good cry is a cleansing of the soul. Some days are better than others. I force myself to shower every day and dress even if I am staying home. I am sure all the ladies have days like this. This too shall pass.
I had a routine while working. Now, I have no routine. Sometimes I realize I think it is Saturday and its only Friday or it's Sunday. Sometimes I just take naps bc I am feeling so down but I am trying to stop that.
Try not to look too far ahead and just deal with things day by day. It's easier said than done, but it can get overwhelming. I hope you have support or faith in a higher being. I pray often and that helps a bit. No, many of us go back and forth from having good days to really bad days. I think people without this disease go through ups and downs also.
I don't pray to God to make the cancer go away but I pray to him for me to be able to handle it better and knowing that there are thousands others struggling with the same thing. It's okay to let yourself feel down sometimes. Hugs.
I have great faith in God. I wouldn't have gotten this far without him. I listen when I pray and what I heard I'm trying to understand. I heard heaven is within. I also heard do what I want. If I want to sleep then sleep and eat when I want. I think what I'm being told is I'm to rough on myself so sleep and eat and do what I want don't feel guilty
It is all life long, but like you I sometimes get overwhelmed! Sometimes it takes a day or 2 to get over it and get back on track.
You sound like you are really low. You may want to speak to a therapist who may be able to help you work out your depression. Maybe they may even have another antidepressant you can try!
We can't do this alone!
Sometimes we get so low, like in a black hole, we need a hand to climb up!
Sending love and hugs,
Marianne.
I'm praying for better days for you!
I hope you are able to find a support group to help you through these times. I live in the Bay Area of California, and the Bay Area Cancer Connection has been my lifeline. When I get really down, it's the other women in the group who help raise my spirits.
Hi Stinsonmom,
Stinson Beach is one of my favorite places on the planet! How fortunate you are and I hope you feel well enough to have walks along the ocean, which I find so rejuvenating and peaceful.
Good to hear about this BACC as I live in North Bay of CA, where there is a cancer support group but not one for MBC patients.
Wishing you all the best with your treatment and recovery.
Red
I'm so sorry you are feeling down. That is never a fun feeling and I think its easy to beat up on ourselves when we feel that way. I think its ok to be in the dumps from time to time. I feel "off" from time to time myself and cannot pin-point what it is. But each day, each hour is new and my feelings can change quickly. Every morning a friend and I swap text messages sharing our thoughts about the daily devotions book we are reading. My friend is dealing with her own very serious illnesses that keep her from doing many of the things she would like to do. Our time together in the morning is critical and reassuring, a great daily way to give encouragement to each other while affirming God's plan for us. We are both early birds so our texts often pass each other with a swooshing sound at 5:15 or so in the morning. Blessings to you and I hope you are able to work thru these feelings.
Sorry you are struggling its not easy to be sure. My first thought is to consider trying a different antidepressant. I understand how side effects can put you off but if you can find a medication that works it really will make a huge difference. I have struggled with depression most of my life but perhaps lucky that l adjust well to antidepressant medication. Regarding fatigue.. no way are you alone in this dept. At work l just have to go and sit down lm so tired, and often l drive somewhere and just sit in the car , rest, until l can push myself to continue on with my business.
Stable. Thankful. Loving the winter sunshine.
what questions to ask the ENT today?
