My Husband, My Life, My Love, My Family, My Cancer
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This is as close to a love button as I could get Mel.
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Hi all.
So yesterday I did a Zoom meeting with one of the committees I am on. We needed to get some business done as we had not met since early March. The thing is, I don't have a camera set up yet (ordered online and not here yet). So my "picture" was my name and I had to communicate by "chatting"--typing my responses. So not too convenient. Also, a couple of the members' computers froze up and their speech was garbled and their faces frozen. We did what we needed to do, but not my favorite way of meeting.
I then wondered about virtual MO meetings. I have had 2 onc visits on the phone. But when I get the camera and set up next MO visits virtually, do they tend to freeze and have technical problems? I would hope if you need to have a serious conversation with your MO--say change in treatment-- that you could hear the doc and they can hear you. What a world we live in now.
Also, I think I may stop Facebook for a while. I tend to get frustrated when I am on it. Seems most of my FB friends want to reopen society and are bored/frustrated with the virus. They post things that irritate me. Then I reply to their posts and around and around we go. I want to post something to make them really think. About dealing with cancer and the virus world we live in now. But they cannot/ don't want to understand. I want to reach thru the computer and shake them.
Not much going on today for me. Like all days.
Glad I have you all.
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Hi, Candy,
I have had one Telehealth visit with the NP at my cancer center. For the Telehealth visit, I thought it was a bit weird. The NP was very uncomfortable with the system, and it was like we were on a social call. I didn't feel that I got much substantive info. Next week, I have two Telehealth visits and I hope they go differently, especially with my MO, because I have imaging next week and we will be discussing that. We didn't have any glitches in the transmission for the Telehealth visits.
In using a different modality for electronic teaching and zoom metastatic breast cancer discussion group, there have been multiple glitches -- people dropping off, sound dropping off, sometimes pictures there but no sound and vice versa. So yes, this is not an ideal setup for any of us, I don't think, to get what we view as vital information about our own situations.
Although any format of Telehealth can be useful for quick check-ins, I'm not sure how well they lend themselves to stage 4 cancer patients who really need to talk through information with their health care providers.
BTW -- I was supposed to have a routine dental checkup yesterday, and I couldn't do it. My dentist's office is very small, but when I looked at the CDC guidelines, which say not to do elective dental procedures, I called and canceled. I'm pretty sure I would have been okay, but I just didn't want to take the chance. Call me a wimp. I wasn't worried about my dentist or his hygienist -- I was worried about who else might have been in that office touching things or whose germs could have been sprayed around with dental equipment.
Hope everyone has a nice day.
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candy-678: reference your question about video meetings and screens freezing— this will depend on your internet speeds and whether you are on a dedicated internet line or shared line (think cable companies).
When upload/download speeds aren’t strong enough for video and voice events, you will see buffering and/or screen lock ups.
When I was working, I used Zoom for meetings all the time. Some days it worked fine. Other days it would stutter. Typically, I was on a cable connection and when the stuttering started, I would switch internet connection to cellular connection and speeds increased and stuttering cleared up.
The internet thru a cable company gives you and “up to ...” speed. If you are the only person on that cable segment, your speeds are good. As your neighbors use their cable internet, the total speed you have diminishes.
If your internet is a DSL line, then your piece of internet speeds remain the same, it’s “yours”
Oh... and the speed of your computer and video card impacts what you see. Is your computer an older model? Asking since there isn’t a built in video camera.
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BevJen- Yeah MBC patients and our scans/treatment changes are a bit serious for technical difficulties. Hoping all goes well with your scans/results next week. I understand your hesitation with the dental visit. I was supposed to go to dentist before all this went down. Don't know yet when rescheduling. Wanted to schedule for week off Ibrance anyway (before virus) and now virus concerns on top of low counts too. Good grief.
Dodgers- I have a PC that is 5 years old. Windows 10. I have cable internet--supposed to be fast service. When I bought the computer 5 years ago, didn't think about camera capabilities. Did not come with camera.
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Thanks everyone. I am better today but still tired. My PCP had me schedule a Covid test so I'll have that on Friday morning. I'm really better but it is a 'lets be on the safe side thing'. I am stressing over the swab but sometimes you just have to get stuff over with. It is really encouraging me in a way to hear your words about piano lessons. They're online now but DH hears me in the next room and says ' you are putting way too much energy into those lessons and then you are coming out of there absolutely shaking tired'. He and I talked last night and agreed it is time to stop. I have just a few more weeks, an online recital and then I will let my students know. This is huge for me. I love teaching but it really has gotten too tiring for me. I've been teaching for 35 years. it'll be hard to give it up.
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Moomala- Sorry you are having to give up something you love. Cancer takes so much from us.
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Moomala~I know how hard that decision must have been. I am sending you a giant soft hug. I hope that you know you touched every single one of their lives. I still remember my piano teacher. Mrs. Beechum. She was a sweet woman. She made me feel like I could do something. She made time for me. Like you did I think you’re amazing to have done it this long. Sweet woman...
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I'm in tears this afternoon Mel. Piano teachers are mostly such special people and I have never made much money doing it. I just loved it and all the kids I've taught/nurtured/mentored/loved and given my time for over the years. This will be so so hard.
I had the Covid test this afternoon. I was so scared of the test (yes I'm an anxious person already) I puked before we left. But it really was not that bad and I would tell you if it was.
Please wish me negative thoughts. HaHa that sounds so weird. I mean that the test will be negative.
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Moomala negative thoughts sent. Haha
Piano teaching seems like it would be a career you have a passion for. I’m hugging you with cottony softness with Mel.
Candy I could see you not looking forward to a Dr appt after that technical chaos.
Tanya
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Got my Webcam today. Woohoo, I think. Have it facing the wall when not in use. Kinda weird---I think someone is hacking in and watching me thru the camera. So now they will see the wall---hahaha. But the microphone???? I am not a techy person.
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Candy, one thought - if you have a smart phone, you can download the Zoom app and take the video conferences from your phone. I do video conferences from my computer and my phone or iPad. Sometimes my connection is better on the phone - better connection than my WiFi. I have COC video conferences every 3 months with my COC Protocol adjunctive MO. They have worked out fine.
Moomala, I am sorry you have to stop teaching. It must be such a gut wrenching decision and very difficult.
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Oh Moomala, I am sorry you are having to give up the piano lessons. I can understand the physical toll they were taking but it will be such an emotional loss. I know you will get through it, I am just sorry that you had to make that decision.
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I'm with you Moomala~no covid. Screw that. You've had enough and more than your share of issues to sort through lately. So I'm hoping a big negative on that right there!
Hi Candy. Hello Mara, Bevjen how are you?. Dodgersgirl~ hope today was a good one. A busy one for me. I feel so tired. Shetland, hi darling. Hope you're resting sleeping tight. BooBoo~ miss you ! Hope you're ok. Simone. Haven't seen you. Stillivin. Hugs to you my dear. Pots. Same to you. Rosie~hello friend. Hope you had a good day. Philly....we miss you around.....Grannax~Been too long. MJH~ busy as usual I'm sure. Grand son keeps ya hoppin. Tanya~your comment about pillowy soft was adorable
Rant warning ⚠️
I feel like crap today. I have pain and I usually don't. I didn't sleep an hour last night. I have to say it was difficult today. I had no nap. I'm melting away as I type this I feel so badly. Cancer just plain sucks. Covid is a distraction. But Sadly I still have cancer at the end of the day. Some days are so so good others. Are really bad. Today was bad bad. Headache all day. Just plain crap. It's bedtime and I'm sweating like it's August outside. No one but you ladies really understand how absolutely terrible you can feel daily. Hourly. Even minutes to minutes! I try to explain but there is no way to do that. They just look at you with those puppy dog eyes feeling sad because our family got one of the ultra short sticks. My stomach is bugging me tonight and that just doesn't happen. It's out of place Not a usual thing I experience a lot. Just Effin sucks we have days like this at all. No less quite often. How does one continue to do this everyday? It's a shit deal. Fight for years and years. While suffering to come to a suffering end? Wow. Doesn't sound good either way to me I feel like we suffer now with things. Silently. Don't really say as much because we don't want to complain. Sitting in one chair everyday because you have the energy of a sloth. Never in my wildest nightmares would I believe this would be my life. It was my worst fear. And sure enough if it didnt happen. Somehow deep down inside I knew it was going to. That something was. Things were just going along too happy. Too good. Then my world blew up. Still trying to find some pieces. Never to be found again. So angered sometimes. I was at the peak of my life. As a woman. I had just became comfortable in my own skin. I was ok with who I was . Well that was taken. Now I hate my skin. Now sometimes I think I hate everything. And as we hop along this cancer trail, comes along coronavirus. Join the Effin party. Why the hell not? I'm off to try to sleep. Maybe one night?
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Moomala, I'm so sad about your giving up teaching piano. Must it be all or nothing? Can you conserve some energy for some teaching by giving up some other duty? But I'm sure you have already been over this ground. I had a plan—should cancer eventually take away my dancing, I would turn to my garden. I did not expect some rogue virus to come along and cut off dancing. So I am throwing myself into designing a garden, with help for the more strenuous physical tasks I was also planning to get back to tutoring but the past year of cancer stuff never allowed me to do it. I hope you can find something old or new to love that is more do-able for you now
Mel, good rant. What a way to live, huh?
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Moomala - I'm sorry the day has come when you had to give up the piano teaching. You kept that going over the winter when you were so ill, it really showed how much passion and care you have for it. I hope you have/find something else you can pour that same love into instead.
Mel - I hear you - had a similar day yesterday where everything was frustrating, the weather isnt cooperating, and the damn cats woke me up early (it gets light here a bit before 5 now) so I was also tired and cranky. Some days like that you just have to throw up your hands, give up trying to make it happen, and eat a piece of cake
Hoping today is a better day for you too.I did manage to call the new GP office yesterday. The receptionist sounded professional, intelligent, and actually picked up the phone on the first ring, which makes a significant change from my last GP office. So I guess that was one good thing to come out of yesterday. Otherwise I am having a bit of increasing back pain, which is a little concerning, but it goes away when I move. MO monthly check in is next week and I'm not supposed to be scanning before June. However, this is the existing herniated/stenosis side, not the cancer side, so it may just require more movement than I've been giving it. I felt incredible when we were moving house a few weeks ago as I wasn't sitting all day. Just about to pull the trigger on a Peloton or a similar set up because I have got to keep that back moving and I can't get my heart rate up by walking alone, not to mention itll help a lot with mental and physical condition.
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tyvm sondra. I guess we’ve all been there. Like I said I only you ladies get it. Insomnia again. Ugh!!!!!
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“Some days like that you just have to throw up your hands, give up trying to make it happen, and eat a piece of cake
“ Wise words, Sondra. Now why is there no cake in my house? I must look into that.0 -
Morning all- 8am here.
JFL- I do not have a Smart Phone. Yeah, kinda weird, huh. My cell is talk and text only. I have the PC in my house-- in the "office", with a printer attached. No Laptop. No Tablet. I am not too techy. I did get the Webcam last night-- delivered to my home. It is set up now. I just don't like the idea of virtual visits with MO if a serious talk is in the plans. Don't want the buffering and tech problems when trying to discuss serious stuff. We shall see.
Mel- I understand your rant. Sometimes with the hot flashes (even in the dead of winter I am sweating) and the fatigue and the tin man aches, I think about stopping the treatments. I know I cannot stop the meds, but I hate how I feel sometimes. So different, so worse than I used to feel. I am not yet 50 years old and I can feel so crummy sometimes. And I know it is the meds. They have the cancer at bay, but I can feel so cruddy. Hope today is a better day for you.
Facebook issue I posted about--- Yesterday after my post, I "unfollowed" several of my FB friends. The ones that constantly post things that rankle me. So today I noticed a few posts from the "calmer" friends I have and A LOT of ads. Mostly ads. Oh well.
Hope everyone has a good day today. Sunny here and supposed to be 80 degrees. Way too warm for me. But we are going into the summer season--woohoo, not.
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I love cake. But it makes. My ass fatter! Sorry to be so blunt. I watch it what I eat. But cake and cupcakes are my weakness for sure!!!!!
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Mel, hope your day goes better today.
Candy, it is definitely nice to unfollow those people who rankle you and yes facebook has too many ads. They always want me to lose weight.
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Hello Gals! My favorite spring annual to cheer you up! Been out in the yard quite a bit. Helping Grandson with school work in the mornings. Still waiting to hear about my Y90 procedure. Dentists are closed,so no progress with the ONJ either. Getting a little anxious to get Y90 started. Moomala- "negative" thoughts are with you. I am sure you will experience a period of grief over the loss of your teaching career. I imagine that your students will miss you sooo much. You are in my thoughts...
Micmel- yeah MBC just sucks royally. I hate the unpredictable insomnia thing. One almost has to leave every day open because you just don't know when your body is going to let you down. Weird existence. Sending love and hugs.
Sondra- hope the back improves. Nothing stops one in their tracks like back pain
Mae- you are often in my thoughts
Love to each and every one of you, may the force be with you...
Mary Jane
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Such a pretty photo, Mary Jane. Pansies/Violas are among my favorites, too. I had purchased some last year to grow in pots, and they seeded so that this year some volunteers popped up in a few places. I love free prizes!
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Such pretty flowers. I love looking at flowers and gardens in spring and summer. Quite beautiful indeed.
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Yay! My Covid test came back negative. Such a relief.
My appt with MO went well. I am stable ( a few new spots but not enough to worry) and some improvement in my lower back! I have some changes in my lung that are debatable related to rads last year to my mid-back or pneumonitis. Not significant. That was good news, but she is ditching my current drugs for Faslodex and Piqray. Ugh. Not looking forward to this. I'm on a med break at the moment but still taking exemestane. My weight has dropped quite a bit and she wants to see if going off Afinitor helps my appetite come back. I asked for her rationale on a couple issues including why change my drugs, both of which have the same SE profile. She is hoping I will not have SE's as bad as I'm having now. We shall see.
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Moomala~I'm very happy that your covid test came back negative! One less thing on your plate. You have lost weight and have been through the ringer. We need you back in form! I hope knowing that it was negative will give you some peace of mind from that part of the worries we all face.
My birthday is coming up on Memorial Day. My 50th. I don't even know what to think about it even. I'm thrilled to see another year don't get me wrong at all. It just brings sadness that I've changed and my life is so different. I always thought I would be one of those speedy women busy busy. Welp not so much. I just get scared not knowing how many I'll have left. Weird thought when others just ramble oh and at this age we have this planned. Really. I had things planned also. As you can see insomniac checking in again.
Waving hello to Sondra!
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Mel we were talking in support group yesterday about being speedy women who were the glue in the family and kept things moving at home and at work. Now our lives have changed and that is so hard to accept. And WILL we ever be able accept it. I'm 63 and really struggling with this quite a bit lately. For me, back pain has really become an issue. I can barely get chores done around the house. Forget about gardening. Right now I can see my neighbors out the window packing their vehicles to leave today for their summer home in the Adirondacks. I'm just sitting here waiting for Gabapentin to kick in and hoping I can get some work done today.
But in some ways this has been good for me too. Learning to slow down has allowed emotions to start bubbling up that I really have needed to process. In your writing I can see you processing this too and I am guessing this will take some time for both of us. I have a giant tangled ball inside of a rough life from childhood to now that is slowly unfurling as I've slowed down and allowed for tears to flow over what I missed as a child and what I'm missing now. I always thought that after living a tough life I'd have a reward. This cancer shit does not feel one bit like a reward.
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Moomala~We all have our little bag of childhood crap that we carry with us everyday. I know I do. Sometimes people spent a lot of time doing things they should not have and by that behavior hurts entire families. Selfishness by siblings. Mean people added to a family by marriage and you were 4 . I have such a complicated childhood I don’t even think I could even get all the twist and turns. Awful behaviors actions. Grudges held until death of a member. Some bat shit stuff. But my inner circle is strong. I have good kids. (My son is a slob) but other than that they are hard workers. And honest people. That’s what matters. My immediate little family. Life is hard enough. Having people who add stress I just can’t do! My back gives me issues as well. It frustrates me because there are so many more things I want to do. I get it.
Mae~ you doing okay sweet friend?0 -
Mel,
You must have been reading my mind...Mae has been on my mind for the last several days. Hope you are okay, Miss Mae.
Boo
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BooBoo~ I'm glad to see you too.... hope you're doing well. Think of you often All of you ladies are with me daily. Just know that I check for you all often and care very much. Shame we lost some sisters due to the classification change of the thread. I miss those ladies. Divine Lynne50's so special to me. Thinking of you everyday. I adore you.
hugs to allDaniel. Love to know how you guys are doing. Our Leslie??? Your son? Nostalgic today Missing Dianarose....Gracie...Keetmom... Lynne(Manchester). Patty. Sucks!!!!!
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