My Husband, My Life, My Love, My Family, My Cancer
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Candy,
I am not on anytreatment right now. She is trying to let my body rest again between treatments. I think that’s what has my stomach in such a bad way—too many hard drugs, one after another. I will see her again in January, and she will let me know then what is next. I’m running out of options. There are about 5 drugs left to try (her words) so we’ll see. We discussed the day when I will say enough is enough. She totally respects my wishes. So for now, another break, and we’ll see what the new year brings. I have a PET scheduled at the end of December, and I fully expect to see more progression.
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Booboo, Sooooo glad the walks have been good for you and your mood. (Mara, you are an inspiration to us all.). Also hoping palliative care is helpful to you. Your MO sounds responsive, although she missed your first palliative care inquiry.
Mae, I agree with everyone else that your views are gorgeous. Good for the soul to see hills and valleys with your own eyes. Hoping your upcoming report is good.
Candy, Have you ever tried Voltaren? It’s advertised on tv now, (cream) but used to be prescription only. I have family members that swear by it for muscle aches and soreness, but DH has not had luck with it on his knee pain. Maybe something else to try.
Mel, You have such a kindness and understanding about you. I’m so glad something made you start this thread. You’ve been through a lot and never hesitate to help through good and bad.
We have a string of 60s and sunny days coming here, maybe for a lot of us? I’m grabbing these mild days and trying to enjoy them. I hope everyone is doing ok.
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Alright my wonderful friends, Spine MRI was negative for lepto mets, whew! I will have gamma knife to that spot in early December but that’s ok. Enjoying a celebratory glass of wine with DH
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Mae, WOOHOO! I am so happy for you. I am hobbling around doing a happy dance for you. Enjoy that glass of wine.
Lynne
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Thanks 50’s! I always love to see you pop in and hope you’re doing well my friend. I thought about you the other day when I saw a Mini Cooper and remembering that the other Lynne was a big fan, glad you both got a chance to meet for lunch.
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Woohoo Mae!!!!!!!
Mel and Rosie- I will try the patches and see if they work. If so, then ask for ointment versus patch. And I have thought about Voltaren. My low back pain is associated with bone on bone-- no disc left in L5S1. Ortho doc said I need a fusion surgery if I didn't have cancer. So I wonder if topical stuff will work on such deep pain--- only way to know is to try. Also, my shoulder is a bad rotator cuff (I think). So some of my pain is mechanical. So will topicals work?? I need to try. Then I will know, and can say I tried. I have the patches, need to order the Voltaren next Walmart online shopping trip.
Question--- does the lidocaine patches make you numb?
Boo- You are in my prayers. Are you bone only?
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Thank Candy
I don’t know about patches but I use lidocaine cream at least an hour before port access to numb it beforehand.
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thank you very much Rosie..... how sweet.
Lidocaine ointment is thicker and helped me with pain in my spine. It's worth a try even for some relief. 5% lidocaine.
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Mae,
I am SO happy for your news. That is so terrific. Enjoy that glass of wine! You deserve it.
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good news Mae!!!
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Cheers Mae. Enjoy that glass of wine
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So happy to hear your news Mae!
And Laurie, glad you're getting a break. Hope you keep on feeling better.
I'm in a holding pattern until Nov 10 when I will learn more about the sbrt trial. Tomorrow is regular taxol, then the following week one more atezo + taxol on the trial and then I officially come off this Roche trial. Still waiting to hear about scheduling my lung biopsy. I keep trying to work through "if ____, then _____" charts but I don't have enough data so I'm just obsessing about too many possibilities for next treatment steps. I hate cancer even more than normal atm
I've been physically and emotionally more tired but still walking 30 min twice daily and doing some stretch/strength exercise too.
My parents are coming for an outdoor socially distanced visit on Saturday. It's my mom's birthday. They're bringing vegan donuts - yum 😊
Hugs
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Great news Mae...onwards.
Mara, good to see you just keep going and that the walking is really beneficial for you.
Laurie, sounds like a breather is what you need right now. Hard going...
Candy, you seem to have lots of nature around you!
Again Mel... you keep the living room together, so thinking about you and everyone else in here.
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Candy, I don’t know if Voltaren will do anything for your back pain. I think it’s more for muscle related pain, which is probably why it doesn’t help knee pain for my DH. It might be worth asking a pharmacist what he or she thinks might help in terms of over the counter products. I bet you could even do it by phone if you wanted to. Sorry you have so much back and shoulder pain to deal with. I have a bad shoulder that acts up at night, especially when I try to sleep on that side. It makes for a rough night.
Mae, Yippeeee!!
Runor, I hope your mammo was ok, i think it was this week? And hope you’ll break the chain of crappy news with them
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Bravo Rosie bravo for remembering our Runor. Been keeping my eye out for her update.
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just FYI, voltaren (generic is diclofenac) is a topical NSAID and has been shown to work on osteoarthritis pain. I think it does depen on how bad the joint pain is - if you have no cartilage and it's bone on bone, then stronger meds will be needed.
oh & diclofenac comes in different strengths so if the OTC version is not working & you have drug insurance, consider asking for a rx for the stronger version.
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Mae, glad to hear your good news that it is not lepto mets.
Laurie, glad the break is going to continue for a couple of months. Should be easier to figure options left when you are not so physically sick. I am in your pocket whenever.
I am touched that I have been able to help people with walking, thank you all. I am more than glad to be of some help.
Moth, happy birthday to your mom and enjoy the vegan donuts.
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Wonderful news, Mae
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Mae, so glad to pop in and read your great news.
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Mae, YOU GO GIRL! Seriously happy for you.
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Mae, I think of Lynne (Manch) all the time. I drive by the end of her street often. I am sometimes tempted to drive by her house to see if her DH ever painted the front of her garage. It drove her crazy that it wasn’t done, but she wasn’t about to do it herself. I miss her stories, her sense of humor, and her positive attitude. We met regularly for lunch, and I felt like I had known her forever.
Moth, You have a lot going on right now. I am sure that you are anxious to get a new plan in place.
Mel, I have received many complements about your masks. You should sell them.
Minnie, it is nice to see you checking in. I hope you are doing well.
Hugs and prayers from, Lynne
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I am just going to take this time to verbalize my thoughts. Hope you don't mind.
I was sitting by my open living room window today. Neighborhood was quiet--everyone busy or at work. There was a gentle breeze and some leaves slowly falling to the ground. And I got to thinking and wishing.
I want to be normal again. I want to be busy working a job. Deadlines. Co-workers and office gossip. My mind and body busy. I want to spend my days off work doing housework, shopping, yard work, bill paying, etc. I want the extra money to be able to plan projects around the house---not live on a fixed SSD income. I want to attend church on Sundays again. I want to go out with friends to a local restaurant or shopping. I want to plan get-togethers for the Holiday season.
I want to go to the doctor YEARLY ONLY for yearly checkup and routine blood work. I don't want medical crap to be my whole life anymore. The blood work, the scans, the meds, the side effects, the "next" treatments, the progression.
As I watch the leaves slowly fall to the ground, I want my old life back. I want what others have and take for granted.
I do not want cancer anymore.
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Candy, I don't think you would find one of us that would want it anymore either. I can also agree about wanting a more set schedule with other people around everyday, people to talk to in person and reliable extra money. Maybe you will get stable enough to do something like that, even if it was part time. Hoping so for you.
The only thing I can do for extra money which is not huge but has paid for all my October groceries and this month's as well are all the surveys I do, let the TV play videos and ads and play Christmas music to make some money. Sounds stupid but that has really boosted my budget so I don't have to take from my savings to exist.
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Oh Candy,
I so relate. I guess that’s why I told my MO that I may stop treatment. We fight this battle between must-have treatment to stay alive (and all of the crap that goes with it) or stop treatment and die. Wow. What a choice.
I am not sure what you used to do for work, but I’m wondering if you could go back part-time? Not even sure if you’d want to, but at least you wouldn’t be alone all of the time.
COVID really screwed everything up. I think if it hadn’t happened, we could learn to enjoy some parts of our lives. But we fear every outing...every person, even our family members. So I am right there with you girl. I’m praying for all of us, hoping that God will answer my prayers and send a vaccine soon. Hang in there.
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Candy, beautifully stated.
I drop in occasionally to see how my 2015, 2016, 2017 friends are doing. We have scattered due to treatment and met site changes. So many new and very caring members visiting here.
Good job Micmel for keeping this thread going.
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Thank you ladies. Just needed to get that off my chest.
I have wondered about occupying my time with something. But I do not know what. This Covid complicates things. Heard report that there are 9,000+ new cases TODAY--LAST 24 HOURS-- in our State. So volunteering activities--- food pantry, church, etc-- is out. Too unsafe. No Boo I cannot return to my job/career, even part time. Then I think if I did have some kind of part time job, I don't think I could handle that. The doc appts, the fatigue that just hits. Cannot have responsibilities and have to alter them for an appt or stop work due to fatigue hitting. Too unpredictable. What boss or company would tolerate that.
And, as I posted, it is everything. The appts, scans, side effects. The knowledge that the cancer is there and will progress at some time. The loss of innocence. If I had a job, all that would still be there.
Mara- It would be nice to do something for some extra funds. But I don't know what, if anything, is available here. Glad you have your surveys, etc to give you some extra money.
Boo- I back you 100% in your decision to stop treatment. I do not judge you. I am just not there yet. I am on first line treatment. Lots of choices for my future. Well, not LOTS, but you know what I mean. If I may ask, how do you feel about stopping treatment? I mean, how long would one have after stopping treatment? Will it hurt? Will one get really sick before the end? Sorry to bring it up, but I think it takes guts to say 'No More'.
So glad we can talk this way here. Real.
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You all know how important it is that we have this space to share and vent and say the things we sometimes can’t in the real world. Even although we don’t always agree with one another, I think we can see another’s point of view most of the time?
It is reassuring that others have the same thoughts and fears as I have...progression ( check), new treatments which we don’t know will work or what the SE’s will be for us ( check), constant appointments ( check and mine almost ALWAYS mean I’m sitting well after the time), fear and loneliness (check and the bloody COVID to boot), money and being able to live ( check) and so it goes on.
But we are still standing and if we choose to lie down for a wee while than that is our right....I think.
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We hear you candy. I too miss the office gossip, my work husband and I ruled that place, lol. Good and hard working but we also had friends in high places and enjoyed being untouchable, I don’t miss the stress though, not one bit.
As for Covid, yeah, my bucketlist is beyond stalled. So many plans cancelled or postponed but I am tying to be creative with new, localish travels and adventures. Making the best of it is all we’ve got.
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Candy ~spoken like it came from my own mouth. I get it friend. I get it. I’m so sorry you feel this way too. But know you’re not alone. No you’re not hugs my friend.
Thank you Sandi! That’s sweet
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Good evening
Such great news Mae.
Booboo I pray there’s no progression in Dec. just dealing with what’s there already is enough. Whichever way you go (5 new lines or none), I’ll be waiting beside you. I think after Thanksgiving we should do an outside chat with masks or vaccine or distance or everything.
50s girl always nice to hear what you have to say. I miss Lynne Manchester too. I knew you guys had some meetings but I didn’t realize how many.
Candy I don’t know what you could do from home to earn money either. It’s also a tough economy right now. Hopefully things open up soon from the Covid isolation and we get a vaccine. I know you hold your church family and neighborhood close it will be joyous when you can reunite with some of the things you lost.
Waving to SandiBeach. Yes thanks for Mel carving out this MBC cave living room for all of us. She had a vision of support and caring in a time of her own crisis. Applause 👏🏿 for Mel.
My grandson came for 3 days. He’s doing virtual school and his mom works from home. They live in NJ. I know we’re taking a chance but my DS had this child hidden from us for 11 years and we missed al that time and with this MBC I don’t know when my times up. Deep sigh. On a happy note he met his cousins for first time he’s 13 one male cousin 12 so they played bball and then went swimming, lots of laughter and joy, as if they knew each other their entire lives. Tomorrow we’ll do Busch gardens and then he leaves Saturday.
Tany
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