Under the weather

[morty87]

Does anyone else just feel under the weather from time to time? I spent the entire weekend in bed having a "pity party" for myself. I wait for a follow up brain MRI to see if a "spot" is a new spot or remnants of gamma knife in 2017. Yes, I'm worried but those around me seem to act as if nothing is wrong. I need some help with positive vibes!!!

[hdhonda]

I did that last weekend. I am not so sure that it was a pity party though. I was exhausted and 24 hours in bed did me wonders. I watched TV and slept. I got up to go to the bathroom and eat. I didn't eat much though.I think I probably slept 20 hours. I woke up feeling completely renewed the next morning, got dressed and went to church. We went out for lunch and I felt great the rest of the day. I really think my body needed the rest. Blessings, Hannah

[morty87 in reply to hdhonda]

Thank you - yes I slept for 10+ hours each day and didn't eat much. I do feel better today. I appreciate your response.

[Barbteeth]

I overdid things a few days ago then slept for 12 hours and was raring to go after that

I’ll not push myself too much...I’m trying to be the ‘old’ me and I can’t

Very frustrating

Barb xx

[mariootsi in reply to Barbteeth]

I think we all want our old selves back. Damn cancer!

[Francesca10]

Yes Morty

My sleep patterns changed and I just needed rest and sleep. Finally slept through for10-12 hours two nights in row. Felt so good.♥️

[Red71]

I think we all try to be the people we used to be and definitely overdo things. The only answer seems to get more rest, either by giving yourself frequent naps or spending a weekend in bed or whatever else works for you. I can’t seem to make my body stay in bed for more than a maximum of 8 hours so I go with frequent naps or just putting my feet up, so to speak! Recliners are wonderful, but it does make me feel like I’ve turned into my father who was often to be found in his recliner after dinner. Elaine

[nstonerocks]

Oh my goodness, does anyone NOT crash at times and sleep a day away, feel down and out and sorry for ourselves. We are not living the lives we had or expected. We're riding a wave of scans, meds, doctor visits, good news (being stable is now our good news, learning not to expect to be cancer free). Bad news. The finances of having cancer are mind boggling. The social issues are things we never dreamed we'd have to deal with and had no idea about until we were plunged into this lifestyle. Constantly confronting our mortality, being hit upside the head by ads, movies and other people with the cancer thing. It seems relentless. It is no wonder that our minds, bodies and spirits sink. It is a wonder that we rise again and again. It is a choice you make. For me lately it has been day by day, and I'm exhausted too. As if meds which suppress your immune systems, thin out your hair, and get jabbed into your butt monthly aren't enough. I'm going for my 3rd endoscopy Friday. Yep, three in about a month. I'm almost looking forward to the diprivan and the pleasant sleep it gives me. Then it's off to the radiation oncologist to talk about zapping some nodes pressing on my esophagus WHICH have been there since the get go, but I only knew about one. I am not one to read reports. It hasn't been good for my mental health, and I rely on my doctor to interpret things. I won't belabor the shock and awe of this turn of events, but I am cooked. So go sleep a day or two away, eat some comfort food, do what gives you a break from all this. Of course waiting to find out what this new spot is, is stressful, Whatever it is, you will get through it. I don't mean this lightly. It is tough facing a set back, a possible new treatment. You will do what you have to do. You will have better days and more joy and energy in your life than you have right now. I'm counting on it. I'm hoping for it for you and for all of us.

[morty87 in reply to nstonerocks]

Thank you for such an insightful response. You nailed every thought I’ve had. I will pray for you and so many other facing this beast. I appreciate the special sisterhood this forum brings. God bless you all.

[NShaft in reply to nstonerocks]

You absolutely nailed it. The mental energy needed to deal with this thing is as exhausting as the loss of physical energy. Maybe those down days are our bodies' way of saying that rest is needed and that's ok. I'm trying to listen but I still fight it. Every. Single. Time.

[nstonerocks in reply to NShaft]

I fight it sometimes. I’m learning to surrender or at least compromise. 5+ years🤭

[mariootsi in reply to nstonerocks]

Beautifully said, Nancy! You said it all!!!!!! Love ya!

[Stage4Gir]

Oh yes i can relate too! Some days I’m full of pep and others just feel like I have the flu. I’m learning to try and listen to my body and rest more when needed and not push so much which was my usual way of handling fatigue. I’m guessing the stress of waiting on tests can also zap your energy. My daughter told me I’m always cranky when I go for test etc and she’s right.

[MyMiracle13]

I feel so tired today and also felt that way the other day. We have a term for it here and it’s “low batt” which aptly describes the feeling we get when our energy is slowly but surely being depleted. Can’t rest this morning as I have to go to work but I hope to get a nap this afternoon to recharge my “low batt.”

[Andersl]

What i'd like from my family and friends at times like that is a little empathy and understanding of how im feeling. Very often though they say things like " it'll be ok. Dont worry". I know thats because they probably dont know what to say or even are worrying themselves but not declaring it !

Maybe you have to teach them... subtedly...eg "my consultant fully understands my concerns and worries and assures me its normal in the circumstances of uncertainty" .

Can i just add.... try to switch your mind to things that make you feel good at these times

Best wishes

[PJBinMI]

I think the better question for us is does anybody NOT have a pity party from time to time! Living with this lousy cancer is really hard! Between the cancer itself, side effects from treatment, the big unknown ahead, scanxiety, family and friends often not knowing what to say----it adds up! I hope you have the MRI soon and get results quickly!

I just got up--I have two cats demanding attention and about to add their own notes here! Hard to use the keyboard with George rubbing his chin across my fingers! LOL Please keep us posted.......

[Wolverine19 in reply to PJBinMI]

I'm glad you have your priorities in order. The cats demanding attention and you complying tells me that you truly do understand cats. I am a cat lover myself

[mariootsi]

Sending positive vibes and prayers and hugs. I always feel under the weather before a scan and while waiting for results. It's all about stress and anxiety in my case!

[barbarac76]

I don't see how it's possible not to feel under the weather, whether physically or emotionally, when living with MBC, especially when there is any hint of progression. From the day I was diagnosed, I have felt like I'm living on a different plane from the rest of the world. It is so understandable that you are feeling this way waiting for your MRI results.

I also get so tired of getting "clicheish advice" from the few people I have told. I know their intentions are good and I should receive there comments with that in mind, but it's just so darn difficult.

I sincerely hope you get some good news regarding your spot.

[Hidden in reply to barbarac76]

Hi Barbara,

I agree with you. I have also felt like I was living on a different planet to everyone else too at times! How can we not?! I also get a bit fed up of advice from people about "Being strong" and "You've got this" so on and so forth! People mean well and want to help, but I do wonder if they would still say such things if they were the ones experiencing metastatic cancer.

Sophie

[morty87 in reply to barbarac76]

Thank you so much!

[nstonerocks in reply to barbarac76]

We are definitely on a different plane. Sigh

[Hidden]

Hi Morty,

I hope you will soon know what's going on with the new spot that has been found. Hopefully it is just the remnants of your gamma knife treatment, as you say, which will be a relief to you. Is it your friends and family who are acting as if nothing is wrong or the medical staff? If it's your family, it may just be that they do not want to show how worried they really are. Or if it's the staff, then I would feel more confident of good news!

I have always felt that the worst thing about having this disease is not the treatment itself but the not knowing and the waiting. While we are in treatment, we can be confident that the disease is being controlled and pushed back, but if something changes then it's back to square one again of the uncertainty, fear and waiting to see what comes next.

Hopefully you will soon know for sure what is going on.

Sophie

[morty87 in reply to Hidden]

Thank you. You may be right. I asked my daughter (23) last night if she wanted to talk about "it" and she said an abrupt "NO". I get that they are hurting too, but geez give a me a little empathy that I may have something affecting my brain!!! For the most part they are good, but again they "forget" what's going on (maybe because I act normal most of the time) and go into "what's wrong with you?" phase. I do try to be independent and yes I read every bit of information that I find (contribute that to being a teacher!) This is a battle in more ways than not. I appreciate the encouraging words of all of you!!!

[Hidden in reply to morty87]

I know it's hard for family, as I was in their position when my mum had cancer. But honestly, I think our situation is harder than theirs. We are the ones who are physically going through this disease and need support. They have a relative with cancer, but don't know how it physically feels to have cancer and to face the fear of what's going on in our lives. When we carry on as normal and look normal, others often forget what we are facing. But we still need support.

[kearnan]

I went to cancer center yesterday to finally get the results of the CT scan that she was supposed to have on my last visit but did not. I have mets to the lungs. I am taking Verzenio (had to get off Ibrance) and falsodex injections.

Yesterday she told me that there were two holes on my spine at the T-15 and L-2 (whatever that is) and acknowledged that they were breast cancer mets and that I have an extremely low amount of calcium in my body. So now I have to get an extra shot (got my first one yesterday) of Xygeva (?) in my arm and she told me that I will have to start taking calcium supplements otherwise I could easy get broken bones and fractures. Up until now, it was just in my lungs.

My friend that I told who called me last night and said I am so so sorry. I said I am fine. As long as I do not feel pain and can continue to walk and do things on my own and stay independent, I can do with a new shot. It seems the side effects are the same ones I am already getting from the drug. I was not upset, just like UGH...a new shot.

But there are times I get really depressed but more to do with going this alone, having no family and none of my friends live in Brooklyn anymore (I only stay bc I don't drive LOL). So it's hard being alone all the time and I miss the socialization from work. So I will get depressed but then will see something on TV or read an article and will realize that OMG...some people have it so much worse and that kind of takes me out the pity party. But hey a good cry is always cleansing for the soul.

[morty87 in reply to kearnan]

I'm so sorry to hear. I did have lumbar surgery as that is where my MBC came back. I was in a great amount of pain but with the surgery I can honestly say that I am painfree. I did have radiation on my spine (10 sessions). My L1 vertebrae was the consistency of butter and was removed and replaced with a plate and 8 lovely screws! I take a double dose of calcium every day and seem to be stable from that point. It is very important that you do not take a fall. Take care of yourself. Thank you for reaching out and sharing your story. My prayers are with you.

[kearnan in reply to morty87]

Thank you. I don't know why but I never get nervous about CT scans or what they say. My motto is that "it is what it is." Worrying is not going to change the results either way so I don't waste the time. The odd thing is that I thought the CT Scan was to check on the new cancer tumor they found in my breast far the original. This was after having an ultrasound done. So I said well what about the new cancer tumor they found. You didn't mention that. She said CT scans don't show cancer tumors in the breasts, they are to check more for the chest area and such. She also mentioned I have some kind of infection and inflammation in my lungs that they say are not caused by the breast cancer mets. So now before my next visit, I am scheduled go have another ultrasound to check on the new tumor. As long as I am not feeling pain, I can deal with as many pills and shots as needed. She mentioned the same thing that my bones can be so brittle that a simple fall could break something so I will continue to get this new shot on top of taking calcium supplements (first time I ever took any kind of vitamin or supplement) and just take it day by day. For me it's all about the quality of my life and for now at least other than the regular side effects, I can still do things and be independent for the most part so I am good with that.

[morty87 in reply to kearnan]

Initially I was worried that the cancer had moved to the bones. From what I continue to read, it is not as bad as others. It's still bad, but manageable. Take those shots, down those supplements and take care of yourself! Seems like we are all in this together. I've gained a lot of support from this forum. It's nice to reflect with others that seem to be in the same boat.

[kearnan in reply to morty87]

I am good for now. Worrying does me no good and it will not change what the outcome will be. Is the spine not considered the bones???? I try to find a silver lining in everything so the good thing is I can get this new shot at the same time I have my falsodex injections. It would have been more of an annoyance if I had to go back on different day to get this new shot. So that is my silver lining

[morty87 in reply to kearnan]

Yes, the spine is the bones. I also had a small spot radiated on my left hip. The radiologist left it up to me, and I told him to zap the little booger!!!

[kearnan in reply to morty87]

LOL

[Hidden]

Hi Sandra,

No, you have never offended me! I was thinking of friends who have had breast cancer (and recovered) and even the mum of a friend who died from leukaemia. They often tell me I look well (don't most of us?) and will overcome this disease. So I was not thinking of anything you have said. Please don't think you offended me because you never have. You have always been very supportive and kind.

Sophie

[nstonerocks in reply to Hidden]

Sophie. In the last month I’ve had several days when I couldn’t swallow anything, had 2 endoscopies. I have been in the hospital overnight or two twice. Taking these life extending meds that

Kick your ass. Work full time, I’ve been scanned and esophagrammed and more tests this week. What do people say? “Well you look good!” I am trying to keep my head above water so yes I put the lipstick on and paint a smile, brush roses into my cheeks and can walk a straight line. Don’t look like a corpse, I must be ok. Yup, still have a pulse. I guess I should be flattered, but sometimes the gap between how they see me and how I feel is isolating. That’s why I hang out here🌈

[Hidden in reply to nstonerocks]

Hi Nancy,

You have certainly been through the ringer lately. That is a lot to cope with. I bet you had to grit your teeth when people were telling you how well you look. I am sure you do, but hearing that when you have to go through so much can be draining. I'll have to remember the "not looking like a corpse" analogy for next time!

Sophie

[Julie2233]

When I was having a tough time in September after starting afinitor and exemestane I found instead of the usual 7 hrs I needed 9 and sometimes 10 hrs sleep a night. Because I can work flexibly I agreed with my boss that I would either work from home or start work late - basically when I turned up.

I turned off my alarm clock and let myself wake up naturally and then didn't rush. It really helped, I don't think I could have coped if I hadn't been able to do this. The power of sleep is severely underestimated in our modern society.

I am very lucky that I can work flexibly and my employer understands that if they don't make accommodation I would have to take sick leave and be out of the office completely.

We all have days when it all becomes overwhelming on those days just go with the flow, don't fight it. Don't ask anyone's permission, just tell them what you are going to do to help yourself get through it. You are the expert on you and you know what you need to do. Just know that tomorrow or next week you will feel better again.

[nstonerocks]

You are amazing and

Motivational. You have kept me from leaping off into the abyss several times. You are always generous with your kindness and thoughtful consideration of someone’s situation. Please don’t be on guard. I need you to express yourself just the way you see it and it’s always done with the utmost empathy for the person you’re responding to. No lie!💕😘

[Hidden in reply to nstonerocks]

I agree. Sandra is always empathetic and kind to everyone on here.

[barbarac76]

Sandra,

I completely agree with Sophie. I have NEVER interpreted your comments as offensive. On the contrary, you have always been so supportive, empathetic, and kind to all of us. Even when your comments are directed to someone else's post, I feel your genuine support and feel uplifted by your responses.

I've become less tolerant as my MBC progresses with the few friends and family I have told (who don't have metastatic cancer). I suppose my expectations are too high. I'm sorry to sound so negative, but I get tired of hearing them tell me about all the great drugs on the horizon when they don't even know what type of breast cancer I have.

[nstonerocks in reply to barbarac76]

It is isolating this gap between us and we’ll intentioned well people. Thank God for this space

[barbarac76 in reply to nstonerocks]

Yes! And thank God for people like you who not only "get it", but who are also are so insightful and able to express their insight and empathy in just the right way.