My Husband, My Life, My Love, My Family, My Cancer
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Emac, you’re absolutely right about the dumpster fire that is 2020. As for how to get through the stages, I find having something to look forward to immensely helpful, even small things, like a great meal or a little gift for yourself.
Thinking of everyone here and wishing you all well.
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I know I would feel a lot worse this year if it weren’t for my grandson. I can be completely and utterly exhausted and see him and all of my cares disappear. I don’t know who knew I needed this enormous gift I’ve been given. My husband tells me all the time how much he (my husband) will miss me when I’m gone, but he is so selfless and tells me to spend as much time as I want with my grandson. No one else is around when he is in the room as far as I’m concerned. The funny thing is I wasn’t ever sure I wanted to be a grandma. I have an only child, and except for her, children have never been my forte.
I am going to be blessed with having him a few times a week to help, and I’m so excited. In the back of my head I keep saying I better not get more sick right now, my daughter and her husband need me. It’s very scary. I don’t want to have to say no ever to being with him.
I’ve been feeling so tired for the last week or two. I woke up this morning with energy for the first time in weeks. I get so excited when that happens. I wish I knew what I did differently to feel this way.
Hi back, Mel, and everyone else.
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Emac ~Oh sweetheart let me give you a welcome hug. My gosh do we understand how you feel. I am feeling the same way about things. You're so not alone. This thread has become a little family with a core of people. I adore them. I adore this thread because it reaches people in ways I just personally cannot. But if someone reads along with me when. I'm having a shit day and they feel less alone , then creating this thread was worth it. You're so welcome here. I hope you will become part of our family. Sending virtual hugs.
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Emac, welcome to Mel's living room as it has come to be known. We definitely share a lot with each other both good things and bad but always caring. I see it is a fairly recent dx to stage 4, that is still fairly new to try and deal with along with regular life as well.
As far as how to live this future, one day at a time is definitely the way to go. Don't set up too many expectations and do one small thing you can do. I am lazy when it comes to dishes so I usually soak them and then walk by and clean one at a time, never feels like too much. When washing bedding, I get exhausted because I only have a small twin tub portable washer so I can wash one at a time. If I am feeling really tired, I may wash one a day. That way it all gets done. I can also steam them to remove dust and toss in dryer for a few minutes. Get more done. The whole thing is about do little things at once so you are not overwhelmed. I am not clear on SE you are dealing with but I imagine a lot of fatigue and stress going on. Go ahead and enjoy the blanket, watch favourite movies. Don't worry about anything but the day you are on. Talk to us if stressed out and the biggest thing to know is that time does help the most immediate distress you are feeling. Zoom with friends as well. You are further along than me, you are decorating your house. I am not, not because I dislike it but part of it is I have nowhere to store decorations, tiny place but honestly would not have the energy for that.
I will admit, I sometimes miss my old life as I still worked, shared a mortgage with my Mother until she passed. I got really sick and had to leave a job I liked. I could not handle that kind of stress nowadays. Worked at home for a call center answering calls about people's cell phones. You can imaging how stressful that was but I was good at it. I have had to readjust and be happy with the little things I do now like surveys, listen to music for money and play cooking videos for money. These things interest me now. I also enjoy walking as well. It is hard getting motivated but I can usually get in between 30 to 60 minutes a day. That helps me mentally. Even when I am dead tired, make myself go knowing it will make me feel better when I get home. Eventually you will find more things to help you along. Cancer sucks the big one for sure, won't sugarcoat that and will never say to thing positive. Just go day by day, cry when needed, good stress reliever and talk to people, social workers us and others and please come check back in.
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Welcome to posting in Mel’s living room Emac. You can see we all have very different lives and there are spells when everyone seems to be struggling - those seem to coincide with when the whole world is a mess. For the most part we try and support each other .....when some of us are having a hard time, others are doing OK.
The knowledge and experience on these threads is reassuring and invaluable - you’ll find the ones which suit you best I’m sure.
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It is going to be a nice sunny day to day, going to return some pants I bought. I was really being hard on myself that I could not fit size 18. I then realized that the pants were not plus size which I need anyway as I have super large hips and a smaller waist. My hips and thighs are thicker than other people. Even if rail thin like I was as a teen, I still wore bigger size pants than others of the same age. I am pear shaped. I am no longer giving myself a hard time and just eat as needed. The regular pants even at that size would not get up my legs. Makes me feel better and also makes me realize that yoga pants are probably the way to go with a little more activity. I may train myself for some daily stair climbing on my step bench and do some extra things.
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Welcome Emac. I have seen you on other threads. Come here anytime. I post on other threads too, but this is my home.
Yesterday was a better day for me Online church service in the morning. Couple of phone calls to friends/church people in the afternoon. And Zoom gaming with a group in the evening. And I wasn't feeling so icky as I was the day before. Today is a quieter day planned as most people I know are back to work for the week.
My notes say--- BevJen has liver ablation this week, hopefully Mara will get a good MRI report, and Tanya has an MRI. I know I probably missed some, but I pray for all of you as you face scans/reports/appts this week.
I am glad I found you guys.
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En route home from monthly appointments. I lost 4 lbs this month (yay intermittent fasting!) but my bloods came in low which was a surprise since I feel fine. My water intake has not been good thr last week and a half and I've been sleeping poorly so I need to keep an eye on that. MO was also in favor of ovary removal when I asked, but later in the spring once covid/vaccine stuff has settled down, so I was happy to hear that.
Scans (ct and full spine mri) late Jan, date TBD. Still waiting to get my records through from other hospital however.
She recommended vaccination when it is offered, but no news yet when that will be or how that appointment will come through as details are still being worked out.
Got myself some lunch to take home and it was nice to see life on the streets. Lotta fancy trees up in fancy homes.
Hello to all and to sister Emac, welcome to the party!
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To those of you on Medicare, you will appreciate this story (others may too.)
So my internist is trying to do Medicare annual screenings (which are a lot of paperwork) over the phone to make it so people do not have to sit in her office going through all of the Medicare paperwork. I have a physical followup with her in early March (if it doesn't get pushed back by Covid.)
Anyway, this wonderful NP at the internist's office was the one who was doing the paperwork and questioning me at the same time. If you've done this you know that there is a section where they ask you about social/mental status. So she starts asking me questions about depression: are you ever depressed? how often are you depressed? etc. -- you get the drift. I said to her -- well, on some days I am very down due to my physical status. It's not like you run around feeling jolly all of the time when you have metastatic cancer. So the she asks me: how often? every day? twice a day? more than that? I just told her that it depends upon the day, and what's going on with me physically and also mentally that day.
But I did have to chuckle. It's a stupid set of questions to ask someone with metastatic cancer. Maybe the Medicare people can team up with Big Pharma which does those ads with all of the happy, smiling people who are on the CDK4/6 inhibitors.
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Hi Emac & welcome to the living room!
Mel, you're coming up on 5 years - this is gonna be some party!
I continued my trend of making work for my dh. (remember the fountain? the summer deck pots? the fall deck pots? the bulbs? lol Poor guy gets stuck with 99% of the actual doing while I just go "Yeah, like that. No, not that way. Like this"). I decided it would be nice if we had xmas lights on the back of the house, around the big deck (with the fountain and all the flower pots. Saw a string of outdoor warm white LEDs - it's a 100m! (over 300 feet for the non metric gals lol). As someone said in the reviews, man that's a LOT of lights. I thought I'd be up for helping put them up but our schedules didn't mesh and by the time he was ready, I needed a lie down. So he & ds did it. It's turned out so nice!
I also ordered (but they haven't arrived yet)- a much shorter string for indoor or outdoor which has large & small led stars hanging down from it. I'm really leaning into having light & sparkly things to try to cheer myself up. It looked magical in the ad photos so I hope it is as neat as described.
Other than that - same old, same old. Still have the weird abdo pain which I have made up a list of differential dx for but really,as dd & I keep saying, "we need an IM consult". Seeing my MO on Thurs but not sure if we will be able to get into this as it's the exit interview for the Roche trial, and not really the Abraxane treatment visit (that's the following week). STILL no word about my rads scheduling. Apparently tons of people ahead of me
I finished off How to get away with Murder and needed a new show. Started Lucifer way back on season 1. Still ticking off the Hallmark xmas premieres as well. There have been some very good ones.hugs everyone
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BevJen- My previous MO's office did those questions about depression too. I was not doing a Medicare workup. I am not on Medicare yet. Age 50 and still another year to go with SSD before qualifying for Medicare. But they would ask those screening questions as they were doing the prep stuff-- vital signs, weight, asking about pain, etc. But, Yes, "Are you depressed" "How many days a week are you depressed" "Does it affect your activities of daily living". Etc. Duh. I have MBC. Of course there is depression. I would end with "I am not suicidal" though. Funny thing is they never did anything with their screening questions-- no offer for antidepressants or referral to a counselor. So what was the use of asking if they wasn't going to do anything about the responses.
My current MO doesn't ask all that with their office appts. Interesting. But a different hospital network with different computer generated forms.
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Moth, I love Lucifer, he’s hilarious. Evil is also interesting.
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I am not up to too much today, going to return the pants that are too small, not sure if I will bother replacing as I still have other jeggings that do fit. Might just stick with yoga pants as they are stretchier and more forgiving. I will incorporate some walking into that with walking to the bus stop.
Sounds like Canada will be getting Pfizer vaccines in December and we will be getting doses delivered into 2021. I imagine long care homes are prioritized as they have been hit hard as well as health workers. Not sure where cancer patients fit in that. It is encouraging news. Moderna is also working too. I will be glad to have them, but I think I will continue masking during cold and flu seasons as well. Would be nice to avoid those too.
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Good afternoon to everyone,
Welcome Emac. We all miss our old lives and bodies. I have lots of great ideas but this body creaks and aches from the invasion. Lots of great suggestions for moving forward though. I truly enjoy listening to everyone here. some travel reports, recipes, walks, appointments, it's all just a huge life share from where we have landed in the living room.
Mel we must have a celebration for the 5 year anniversary. I'm so excited for you. this room that you created has eased a crater in the road for many of us. Thank you sincerely.
Mae you're so exactly right about planning little things and gifts to provide hope for the future. I mean you're building a cabin in a mountain paradise so encouraging. That night sky picture is amazing. And not to mention the javelinas, donkeys, and blue birds. Nature is awe inspiring.
KBL grandson love is a tonic. I'm so happy you find so much comfort in his visits. I believe his youth and love will serve to keep you healthy in anticipation of his company!
Mara we have the same issue with pants. I've had it all my life. The descriptive adjectives changed to thick, voluptuous, as I turned into a woman. I find a few pants and then go to town finding tops and things. Comfort is the main objective. I only own one pair of pants that doesn't have elastic. That's a pair of dressy black pants saved for the occasion when you have to be uncomfortable.
Candy i'm so happy you found joy in this Sundays sermon and afterwards the conversations with your friends.. And thanks for the scan reminders for all. I think there's no prep for MRI so I'll try to just arrive at that day without obsessing about the horror of that machine clanking.
Sondra F I do the intermittent fasting thing too. The results are that as long as I stay in my time frame I can eat in moderation anything I want. I try to keep it healthy.
BevJen I get the depression questionnaire at some offices. I think I'll start writing a big YES diagonally across. I wonder are they taking a survey or like Candy said are they actually going to offer some help? It would be nice if at the same day when they womped us with this DX that they gave us a bottle of anxiety pills and said we hope that emotionally you will be able to make it through the next few days. We'll have a counselor call and check on you.
Moth You're so cool for suggesting a party for Mel's 5 year mark. Do you have anything in mind? something festive to look forward to in the living room. You Mae and my DH watch Lucifer. I didn't get into it but my DH binge watched it.
I remember when I walked into the radiation waiting room a few years back. I know my face was green, tears welling up and my stomach queasy a woman looked at me and said, "Oh I see you have your party dress on already." Just like that my fear eased, that's what we do for each other.
My mom told me this morning that she was 8 years old on Dec. 7th 1941 when she heard about Pearl Harbor attack. She said she was at the Apollo theater in Harlem, NY with both of her parents, (dressed up in their Sunday best) seeing a show, as they did nearly every weekend. Her dad was stationed at Fort Dix, New Jersey and was allowed leave every weekend and that's what they did. She didn't remember who they saw that day but said she remembered seeing Count Basie and Lionell Hampton at other times.
Tanya
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KBL - how fun that you get to see your grandbaby so often. Mine lives far away, so visits are more of a novelty. We may be moving a little closer, and my daughter may be transferring to the area (if possible), and my son is transferring to the same state - so, by this time next year, we may be closer to our family than we are now.
moth and mae - my dh and I have been enjoying Lucifer. It's fun and light.
BevJen - those were standard check-in questions for every visit with my old PCM at the military clinic. I don't have a standard questionnaire with my MO.
Candy - I'm glad yesterday was an up day for you.
Tanya - I like that "for the occasion when you have to be uncomfortable: Since I recently retired, I have to reduce my inventory of work clothes, which is a struggle for me. I like my clothes and I have a hard time getting rid of things that are "still perfectly good", even if I am giving them away or donating.
My parents adults at the time of the attack on Pearl Harbor. They were married early in 1942, and my dad shipped out shortly after - and my brother was born later that year.
Welcome, emac! and HI! to everyone else.
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You're so right, Tanya. I have been watching him on and off since birth and praying I get as much time as possible. He just turned 16 months.
I am so grateful he's close, SeeQ. I hope that you do get to be closer to each other. At this point, if my daughter moves, we're moving with her. I've had such a close relationship with my daughter her whole life, I wouldn't want to be far from her either.Welcome, emac.
I buy a bunch of Yoga pants from Walmart. I'm really short and have the hardest time with length. It's like they made these pants just for me. I buy a few pair of the exact same ones every few months. They have a tie and are lose fitting in the legs. How did I ever wear jeans. I hate anything tight.
BevJen, I got those questions in the beginning but haven’t in a long time. I think on my first visit he prescribed me an anti anxiety medwith not even a blink. I never picked it up. I said I didn’t want it.
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weird things happen sometimes. I received a package today and I was getting ready to put it down. I looked on the label, and there on the label was my fathers name as a street address. For example. Say my dads name is. Samuel Parker. The label would have read “3110 Samuel Parker hwy, Parkerville, va.”It blew my mind looking down and seeing my dads name. What a big sign that was. Wow. And weird.
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Mel,
For a number of years after my father passed (he died in 1998) things like that would happen to me. For example, at the time my kids were young, and we used to go to a particular restaurant to celebrate birthdays (just a hamburger joint.) We were there months after my dad died for one of my kid's birthdays. A man sitting at a booth over from us could have been my father -- he looked like his twin. Partway through the meal, he was gone. I mean, I'm sure he legitimately walked out of the restaurant, but I always thought he was there. Other similar things have happened, mostly with my father (I, too, was very close with my dad).
It always startles me when it happens, but it periodically does. I'm not a particularly religious person, but it does make me think that maybe there is something after this life, and that he's still thinking of me. I hope that this brings that same sense to you.
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Well, Tanya, glad to know I am not the only one with generous hips. I still have a smaller waist so that helps. I honestly only have one pair of cargo pants that have a button. I will stick with leggings. I have no problem with them. I also will just buy the size I am at this point in time and stop torturing myself over it. I also agree with the sentiment that part is medication related, tegretol that I take to avoid seizurres did add another 25 lbs when I first started without any diet change. I also think menopause and aging have a hand. I think walking is fine but my suspicion is that I will need to find some home handweight workouts or resistance band to strength muscles. Squat may need to be reinstituted as well. Just to ensure I don't just lose muscle. I may also have to just sit on the couch and pedal while I am here to burn off some calories. We will see.
I did get a lot of good walking to and from various bus stops to get to the store to return my pants that would not have fit me even at my pre weight gain. No worries though. I found the walking enjoyable, even carting home the choclate milk carton I bought. I am going for another walk this evening after taking more garbage out. I want to check out the Christmas lights. Nice night for a stroll I think for sure. I will wear a white vest so I am more visible as that will be safer for me I think. Called my SIL as it is her birthday, DB was yesterday. Sent a huge FB card for him. My younger nephew is apparently sick so he is isolating in his bedroom at home. Not sure if he will tested for covid. We will see.
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Oh Ladies...you made me feel so much more not alone today. I too have had the perennial issue with pants ( we call them trousers... pants are your underwear or knickers - which is a great word). As a PE teacher I lived in joggers so it’s not really a stretch ( forgive the pun) to wear them all the time! Now I have the chemo pot belly as a residue from that and years of tamoxifen....I mourn the loss of my small waist, but always had the bum and thighs!
I’ve also watched the same box sets and wonder if you could access some the great stuff we make here in the UK?
Sondra- in answer to your question still considering shifting back to private care.... need to weigh up the pros and cons properly.
I think those of you with grandchildren will really benefit from looking after them...
Still dealing with the pleural effusion and managing the pain reasonably well on 8mg cocodamol / 500 paracetamol. Low dosage but it takes the edge off. Hate taking pain meds and I need to discuss with MO how we’ll do that going forward as I can’t be a spaced out zombie, unless really necessary. QoL first.
They’ll x-ray on Thurs when I go for Faslodex jabs. My nurse says the hormones take ages to work, should hopefully sort out the effusion, but they might drain it if the x-ray shows lots of fluid....which it will!
Took Fionn the dug out for a walk today - 3 miles on the flat along the canal towpath. It was cold and slippy, so put off the COVID cyclists and Fionn had a ball running off lead. Now crashed out in the one place he’s not allowed!
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Karen,
You just made my day. I love seeing pics of dogs, and what a character Fionn looks to be! I miss my Huey every day, but can at least smile now when I think of him. I have multiple pictures of him in this position too. Thanks so much for posting this one.
Waving hi to all of my peeps especially Tanya. I know we have talked about getting together again, and we will. Probably looking more like after the new year.
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Haha, my dog is not allowed on the furniture, either.
Here is the proof:
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Bev Jen ~ thank you. I want so badly to take it that way. It truly was Astonishing to look down and see that name like that. It was eerie. But cool at the same time. I never look at return labels. Why I did this one is very strange to me. But I did. I’m glad I did.
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My sweet Tag and Deeohgee being sneaky as well. (I miss my tag)0 -
I love the dog pics too! I've never had one as a pet but I love other people's. They definitely make FB more fun.
Pants are no fun for me to try on at all. I carry too much weight all over and am a few sizes above where I should be, but am past worrying about sizes. If I find some that look pretty decent I buy at least one extra pair. I gotta look for those yoga pants at Walmart, KBL. They sound right up my alley.Karen, Somehow I missed that you were dealing with pleural effusion. I hope the solution is near. Good luck on Thursday.
Mara, I like your attitude about weight gain and exercise. I too need more activity. Please keep posting what you're doing, it helps me get out even when I don't feel like it.
Hello to everyone reading. 👋
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Sweet pictures of dogs today. Lovely.
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my daughter and her idea of fun .... lol.
I’m wondering if any of you ladies switched from letrozole to anastrazole. If you noticed any difference?
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Awesome dog pictures.
If anyone is interested, these are the yoga pants I get. You can go to Walmart.com and look for
Athletic Works Women's Dri-More Core Athleisure Relaxed Fit Yoga Pants Available in Regular and Petite.
I went on the site to find them, and they're even cheaper now, but they only had my size in the blue. I bought three more pair. Haha.
I was sound asleep. My husband was trying to call someone from work and accidentally called me. Now I'm wide awake. I don't sleep soundly very often. Ugh.0 -
Mel, Great photo 😊. The dogs don’t look as happy as she does, but they must be good sports!
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