Trying to catch up and just can’t catch a break lately. Got up at 4am with throbbing eye pain- spent 4 hours doing eye exams- hated the place but was hurting-from there went to onc- treatment postponed till next week- have lo grade fever and bacterial/viral eye infection. Contagious for few days. It was such a negative experience on so many levels-regretted not going to ED. I am so wiped out in every sense. I have not been sleeping more than few hours- is this ageing?!idk what to think anymore. I take meds to sleep but I am up in few hours. I was ready to start Herceptin/perjeta tomorrow- now this. I finally came off steroids for acute sciatica and thought I would begin to feel stronger- huh!? I am just venting it out to get through this♥️♥️♥️
Praying for healing: Trying to catch up... - SHARE Metastatic ...
Praying for healing
Oh honey, I am so sorry!! I’m going to be thinking and praying for you!!
I know that feeling. I had been doing okay but in the few days, I have been overly fatigued and severe D that I have not been able to leave the house. It made me depressed. I think it was my getting the flu shot the day before I had to meet the onco and then being told it is in my spine now so besides getting the falsodex injections, they added another injection xyvega(?) to my monthly routine and I think it was all a bit too much. I cried bc I felt so awful. You would be shocked at which I take to get 7 hours of uninterrupted sleep. But I have been doing it for several years even before my diagnosis and even if I try to drop one unisom, I wake up several times. At this point, I dont care anymore. As long as I get some sleep.
I take a xanax (three 1 mg. per day...been on it for over 20 years). So one of them I take at night, with one 10 mg. of ambien and FIVE, yes FIVE extra strength UNISOM and even when I take all that, it takes me about an hour and a half to feel tired but I am able to sleep for 7 hours without waking up so I don't care.
I am sorry to hear you are feeling so bad. The bad days will come and go. I hope you feel better soon. Sometimes it all hits at once. Just relax and hopefully in a few days you will feel yourself again.
That’s a lot of Unisom before you get relief. OTC sleep aids do not help me. I take ambien which does help. Have you asked about that?
You missed that. Ambien and xanax are in the mix. Ambien would NEVER work for me alone. I also take 1 mg. of xanax and 1 10 mg. of ambien plus the FIVE unisom. The first two drugs are covered by insurance. I pay for the Unisom and that can get expensive. But Walgreens usually have the best deal, 100 in a bottle). Even when I was a young child, I was put on medication bc I could never fall asleep. I have been on this combo for so long. My friend takes a little bit of nyquil and is out cold for 12 hours. I wish! At this point and soon to being 60, I don't care. I feel horrible if I don't get enough sleep or wake up constantly. Now I sleep for 7 uninterrupted hours and it makes a big difference.
I’m sorry, I did miss that. Yes, I’ve noticed my ability to fall asleep has declined after I approached my late 50’s. I’m 63 now and my PCP has no problem with my regular ambien use. He thinks it is essential to get decent sleep and I agree! My main issue is turning my brain off at night. Plus I wake up at least once a night to use the bathroom and don’t always fall soundly asleep after that.
Are you able to take a 20 minute afternoon nap? When I nap, it is more like dozing rather than full sleep. But I find the down time makes me exhale and be quiet which is good. I don’t get to do it often but it helps me that way. You’ve tried so much and it has to be frustrating. At least you’ve found some system for a modicum of sleep. Good luck!
Yes I have the mix also- ambien n Ativan. I fall asleep but 6-7 hours later I am up. It’s hard to know what becomes normal after a while? Is it worry? Cancer? Aging? I used to sleep
Like a baby- 8-10 hours. Last few months I am lucky I get 6. It’s a big shift for me.
I am so sorry you're going through this. Not getting enough sleep makes problems so hard to deal with. Have you tried a different sleeping aid?
LOL..what is left. It's a big combo but I have been on this for over five years now. Even when I take them, it takes about an hour before I even feel tired. But at least when that happens and then I go to bed, I fall asleep quickly.
My friend emailed that she took nyquil and she slept for 12 hours straight. Nyquil would not do it for me.
Are you on a drug that would cause these symptoms? Hope you find answers and recover soon.
Ah Francesca. You are wiped out. Not sleeping well makes it all worse. Do your sleep meds work? I have also hit a rough patch and my sleep is a mess I finally caved and took a Xanax,’which made a big difference. Now that your eye is healing, and the sciatica is under control, can you crash for a day or two and just hang out in your pajamas, read, nap, rest? You are still working? I called in for 2 days around an endoscopy and MD consult and faslodex shot. I am my priority now. I still work hard, but we’ve got to be very protective of ourselves. Today I cracked. Once in a while it hits me that I am stuck with this disease forever, barring a miracle, and it gets overwhelming. Especially when things go wrong like scans, illnesses, and just the exhaustion we deal with. Let’s look at the good news. You’re off steroids and feel better. Your eye is going to heal. Things are getting better. I hope you can give yourself a day off. Sending love and hugs and sisterhood your way. 💕
No choice Nancy- forced to stay in with all this goo coming out of my eyeball😤
I don’t know if sleep patterns change as we age because this is for a while now. I fall asleep from meds but then after 6-7 hours I am up. Is this another new normal for me? Idk what to make of it. Still working but out for few days now. How much of this is cancer? Aging?somethingelse? Idk
♥️♥️♥️♥️♥️
Our sleep patterns do change as we age. We tend to sleep less. Hope the eye clears up without a hitch. 🍸 here’s to better days.
I do think our age plays a part. I think as we get older (life's joke on us), our sleep patterns change. I know several people in their 70s or 80s who sleep and nap on and off during the day and and are up all night. I receive emails from a former coworker who is not in his 80s and I always note he sends the emails at like 2:00 am in the morning!
You said it so well🌹
Are you feeling a bit better?
Yes I am, thank you. Had my Bookclub ladies last night and did to much cooking and wore myself out. 2 of my sister friends brought me lunch today. Laying down now. I have a dear friend from Texas coming in the morning for 2 days.
I definitely am seeing a difference on these new meds, I just don't have the stamina. I am a giver not a receiver so it's going to be hard for me to ask for help.
How are you today? Hoping you have or had a great day today
Robin🌹
It is a beautiful day here. It’s been a bit of a rough month for me. Waiting for a radiation consult.
Nancy,
I hear ya! That overwhelming feeling comes periodically when you realize that our mbc is forever unless we do get a miracle! It sucks!
I’m so sorry Francesca. Lack of sleep seems to magnify our troubles - fatigue, pain, anxiety. When I can’t sleep or wake up after just a few hours of sleep, I just pray! That makes me calm and most of the time, lulls me back to sleep.
Yes Sandra the whole experience took me back to a place n time where money is the goal not the patient s well being. Machines n tests not covered but will take cash?! Ugh. Refused all of them.
Thank God I have a good Pcp and onc who kept track of me whole day but I was so angry- I have good insurance and guarantee they will bill $10 k or more. What a racket. Left me with ugly feeling never mind the manipulation done to my bruised swollen eye ball.
Unfortunately till there is a crisis I don’t have specialty drs- need to change that. The only reason I panicked was because 3 years ago I had herpes in my left eye and I was afraid it was back from coming offf steroids etc etc.
Since I am contagious have no choice but to stay home. Have to stay busy or I will go bonkers for sure♥️♥️♥️
I rarely go to my primary doctor. If I am having stomach issues, I go to a gastro, foot issues I go to a podiatrist. Whatever is wrong with me, I go to a specialist in that field. My primary is very close (I don't drive) and older and close to retirement so he would just advise me to go to a specialist anyway.
I am so sorry. I will be praying for you and sending you a big hug. We never seem to get a break from this.
Hugs
Robin🌹
Oh Francesca I’m so sorry you’re going through this. It’s amazing how it can turn our mood around when we don’t feel good or have more things crop up. It’s hard to keep fighting the fight when you just want it all to stop! Here’s hoping things improve for you and you get relief soon along with a good nights sleep! ❤️
Hope you feel better!
Aww Francesca, sorry to hear that you are still having a tough time of things. I sure hope the sciatica improved!! Is your eye infection “pink eye”?? I had the same not to long ago. First time ever. Not fun. Maybe your body is releasing all the toxins from your bottom up, last stop...eyes. :-). Will be thinking of you. Xo
Hi Francesca!
Hope u feel better soon. I often get borderline pinkeye from working with kids all day...typically don’t take anything just wash frequently in hand sanitizer! 😂🤣😂 Head to toe! 😂😱😂
So sorry you are overwhelmed by all of this. I’m praying for you ❤️🙏❤️ Francesca.
Steroids can definitely impact your sleep function. I hope a few days away from that makes a difference. Can you get CBD oil? A drop under my tongue at night helps me sleep. But I don’t imagine that will help until the steroids are flushed out. Like others say, being in pain and sleep deprived is a rough combination. Please let us know how you feel in a few days. I’ll add you to my prayers. Good luck.
Is it pink eye? I have had it and that is no fun and can be very painful. Make sure you do not touch your eye and then the other one. Use your own separate facecloth and towel. Years ago at work (Law firm) a secretary came in with pink eye. Within about a week, several of the secretaries on that floor all got pink eye. The firm then issued a memo about it and said that if a person has pink eye, that are NOT to come to work and will NOT be allowed back to work unless they had a doctor's note that they were no longer contagious.
Yes-bacterial/viral pink eye! Joy?!
It’s so damn contagious too. I think the two months on steroids just knocked out my immunity. Whatever I had left. I stay out of stores, practice good hand hygiene, wear gloves, wasn’t enough.
Yesterday the office I was in was filthy- I put my hands on the counter to fill
Out papers and they were dirty- I had to rub them with alcohol. I was looney when I got home-washed myself raw almost. All I kept thinking was all the chins and eyes that touch those machines! Good God. Not a good experience at all.
Oh Goodness. I remember getting that twice in my life. The second time I could not even deal with daylight or lamps. It was awful and I looked awful. I had to go to doctor to get special drops and was told it is very contagious so I lived alone, not a problem. I hope you went and got special drops for your eyes. Please because of that darn Ibrance, a continuing infection I would get just go so much worse that I required surgery and they cut tunnels in my leg and I had holes, not slits, but holes in my leg. I was so so angry bc I knew the Ibrance had completely destroyed my immune system. They even tried taking me off the Ibrance and gave me five weeks of antibiotics but it got worse. So I was out of commission for almost four months ( could not leave my apt. and I live alone and have nobody close by). It was awful.
And pink eye hurts. I hope they gave your drops and you are right, it is extremely contagious. Dealing with the side effects of our meds are one thing, but then these other things that pop up because our immune systems are so messed up, is another.
I am very heavily scared from the horror of an operation I had to go through. It go so bad that even the plastic surgeon who did it (I found out later that he NEVER did the groin area before) said he could no longer see me. And my onco referred me to him after the first two surgeons said they would need to take skin off my back to cover my leg. I was ready to jump out the windows. To this day, that is still my worst experience from the cancer.
With pink eye, all you can do is use the drops (and its a pain, you can't read, you can't watch TV) and wait for it to heal. I used to put warm teabags on my eye.
I hope it goes away soon. So sorry on top of all this, you are going through that also.
Just not easy time. Am going to see my Pcp today- still have lo grade fever and feel like crap. Now my ankles are swollen- I just lost 13 lbs on purpose so this is????!!! I am just about at the end of the rope now. Treatment got postponed because of all this . Omg just want to scream and cry
Nothing wrong with a good cry. Sometimes we all need it to cleanse the soul. I remember when being diagnosed my first question was will I lose weight bc I was overweight and trying to find my "silver lining." She said no, the meds make actually make you gain weight. My feet are swollen and I think it's a combo of the meds (and the fact that I use too much salt).
One day at a time. That is all we can do. Truly hoping you feel better soon.
Be careful. Because many other people can catch it. At my firm, once one secretary had it and within days numerous people on the floor had it, the firm sent out a memo that if you had pink eye,you were NOT to come to work. I then got it about two weeks later (it made its way around to everybody all bc of one person (she did not know better)). And my supervisor said I was not allowed to come back to work until I had a doctor's note that I was no longer contagious.
Hey, good morning Francesca, how are you feeling today?💐❤
I’m so sorry you had such a rough experience along with not feeling well. I hope today is better for you.
Sounds awful. Hope you are feeling better soon. I find I have two or three bad days and then one good day when I can regroup.
Cancer is extremely difficult to go through and so very stressful. At times it is dizzying to manage everything. Wishing you well.
Minesing Girl (June S.)
Sorry to hear- me too it’s always something- now dealing with a low hemoglobin- off all meds trying to rebuild. Will add you to the prayer list!!
Oh sooo sorry you are going through all this! Isn't MBC bad enough without all this other stuff.
Sending prayers for your healing so this too shall pass.
Love and hugs,
Marianne
Just came in from dr- have uri and water retention from the steroids I was on for 2 months. So now antibiotics, eye drops, water pills and the treatment cannot be done until I am clear of all this. Only God knows what the hell the mbc is doing. Fix one thing and four more go wrong....I am holding onto everything happens for a reason....😰♥️
Hi Frances... so sorry you are not feeling well. It is frustrating to deal with so many issues at once. The fact that your treatment is on hold is probably causing you anxiety and sleepless nights. This was happening to me and I spoke to my doctor. I do take Ambien to help me sleep and also take something for anxiety. I feel it’s helping because the worrying and crying was taking over my life. I know it’s difficult but try to stay positive and hopefully you will have better days soon. xo
Yes that’s part of it all too. Causes anxiety not being able to go ahead with treatment and having to wait.♥️
So sorry you have all this on top of the mbc and I hope you soon recover and are able to get on with your treatment . Much love 💖
James 5:14 Lay hands on the sick and they shall recover ... Dear ladies, I just wanted to let you know that we can lay hands on OURSELVES and Jesus will heal us! I had hurt my back years ago and getting around the house like a crab for weeks, hubby can attest to this. One day I'm sitting at my computer and an email comes in from a sister in Christ, telling me how they went to someone's house to pray for them and how other people showed up and several got healed and touched by God! I got so happy and excited upon reading this that I actually reached around and placed my hand on my back and prayed something like this, "Lord I know You are no respecter of persons and what You have done for others you will do for me, so as I lay my hand on my back I ask You to heal me in the precious name of Jesus, amen! I got up from that chair, first time I had stood up straight in weeks and went running in to tell my hubby! I have always believed in God's healing, but when it happens to you it is so personal, so precious ... Jesus loves you! xo
Francesca! You have infinite prayers from my corner! A couple of thoughts: Melatonin? Sleep mask? Are you taking any type of anti-anxiety meds? Hoping and praying for your well being and rest!! XXOO Linda
Yes Ativan and ambien to sleep. The steroids did a number on me. Now my body has to heal from damn uri, eye infection. Treatment keeps getting postponed and it’s rough to deal with. The port got put in last week and then all this started.
So sorry for all your troubles, frustration, and feelings of helplessness. I'll say extra prayers that your ailments will clear SOON!! God bless you, Francesca!! XXOO Linda
I too have been finding it hard to sleep but I have a sleep disorder which wakes me an average of 10.5 times an hour. I take Amitriptyline and it works really well for me. You might need to do a sleep study to see if you have sleep apnea which would affect your sleep.
I know. My friends tell me the same thing. I only have one cup of coffee in the morning and drink nothing with caffeine after 1 pm, not even chocolate. I have a friend that can drink several cups of coffee and an hour late she is in bed and asleep. But this did not start because of the cancer. Even as a child, I was given meds because they found I was not sleeping. I would lay awake for hours.
Greetings sister/warrior I do pray that God will correct everything that needs restoration in your body. May you have peace, and complete comfort Amen.XOXO
Anyone heard of Piqray?
Dry Eyes?
Progression in brain 6 months after WBRT 😔
