My Husband, My Life, My Love, My Family, My Cancer
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Hi Moth, it is SO good to see you here today !!!
I am following you on Instagram-where you are strength and wonder
and your Nevertellmetheodds piece on survial is amazingly well put. I sent it to my nerd husband as well.
I'm sending you so much care- so much wish for what you need to be okay inside your mind, and healing care for your new scan/liver numbers.
When the sun broke out at 1pm for the first time in awhile, you were in my pocket as the pack and I walked the beach thinking moth thoughts.
(I'll leave hope where it belongs)
It has to be more difficult to be this amazing hero to yourself like you are to us
((hugs))
gladis
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moth, reality sucks! I know with my brain mets the stats are not good, especially the lepto scares, I don’t kid myself but I believe in possibilities, however unlikely. Beyond wishing the best treatment wise, I hope you find balance emotionally.
Micmel, great painting, I’m mostly done with my first, I’ll post it soon.
Tanya, the beach bar should be ready in a few weeks but unfortunately my 2nd Enhertu was delayed by the local onc. Now it’s scheduled for Monday at 12:30. El Paso is on mountain time, so I may be able to pop in briefly at the beginning, we’ll see.
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Mel - beautiful painting!
Moth - lots of virtual 🤗 🤗🤗🤗🤗
Wishing everyone a lovely weekend. Grateful we’ll be able to open our windows again after this horrible heatwave. I thank Mr. Currier for inventing AC but I love sleeping with a window open.
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Moth- My thoughts are with you. Hug.
Mel- Beautiful pic.
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Not doing much today or over the weekend. Did go on a mall walk with older DB and SIL last night, got groceries. Walked almost an hour. Just doing surveys now and will probably go out today, not as hot for a couple days. Do another mall walk and take bus home maybe. Have to complete housework. The walking outside with UV umbrella and neck fan has been helpful. Forcing myself to wear shorts also helped when it was still quite warm and humid last night helped. No special foods on the agenda so will not clog this thread with that.
Have a good day all, in pockets of all who need it.
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It is good to see you Moth. I read your blog and I have been recently inspired by that to do more research. I'm still working at finding sources. I think I have stayed away from it because, as you point out, overall we have not made much progress in terms of overall survival. I think I survived my first bout with cancer by tuning a lot of it out. I just put my head down and focused on what I had to do next. I don't focus on negative stats or dwell too long on how much it all sucks. I have treated MBC much the same way. The two and a half years I have had this I have been focused on getting things done. I think going into MBC at the same time we were globally going into a pandemic probably reinforced that way of thinking for me.
I met with my financial guy and he kept talking about trying to have the house paid off by the time I am 60. I had to gently remind him I may not be here at 60. I'm trying to figure out if I can retire or if that's unwise since I am stable for the moment. I have both STD and LTD at my work but since the pandemic we don't have anyone in HR to talk to about it. All the info is online now or we can communicate through email so I am starting the process of figuring out how that works and the SSDI stuff. I don't think I'm there yet to retire but I want to have a head start on all the info so I'm not trying to figure it all out last minute.
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Moth- you are always in my thoughts. I hope the medication helps for your emotional well-being . May the scans show liver improvement. Hugs
Mel- another great painting !
We are also having Junuary on the east coast. Yesterday was sunny and hot and today is cool and rainy. You never know what you're going to get. I just finished making up my marinating sauce for pork tenderloin for supper. Now it can sit and marinate.
I just thought about the movie "Forrest Gump " when the mother tells him " life is like a box of chocolates you never know what you are going to get". At least with the chocolate if you don't like it you can spit it out and pick another one. With MBC you are stuck with it! No spitting out for another piece of life!
Sending hugs to everyone 🤗
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Moth, sending you love - I read the survival statistics you posted, and I also completely resonate with your comment: "I'm unable to adjust emotionally that there's an end". I feel like I have moments where I can accept that my life will be so much shorter than I ever thought it would be. But then those moments pass, and I feel shock and outrage and disbelief. Honestly, THC tincture allows me to not lose my sanity.
Those statistics also make me reconsider continuing to work, which is fine and completely doable now (still 75% virtual), but for how long? The adjustment to my mindset can still disorient me, as in I used to assume I'd work until at least 65, most likely 70, because I really enjoy it. Now I'm trying to live until 55 so I can take early retirement. But who knows what will happen in the next 2+ years while I'm waiting for that magical number 55? The ground has massively shifted under my feet, this MBC earthquake, it's a 9+ on the richter scale. Sometimes I just stand there, with my mouth open, looking all around at the damage, wondering WTF just happened?
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sfcakes, your earthquake reference suddenly reminded me of something we used to say in middle school. “Going off the richter” (when someone had an extreme reaction, angry, crazy, etc). I don’t know if that was just California lingo or part valley girl but the memory made me smile.
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Emac, I can’t say for certain as I’m in Canada but suspect you would be better off on LTD than retirement. It will depend on how long you have worked but, in my case, the combination of retirement and our government disability would be significantly less plus I would lose my work extended health plan. The health plan was the deciding factor for me as the retirement plan sucks (much less coverage). It’s one of the things I think Canadians are blithely unaware of that our system doesn’t cover everything and we really should sign up for a plan early in our lives. When I was on Ibrance my extended health covered $7000 per cycle. That wouldn’t be covered, at least not completely, on the retirement plan and boy would that eat a hole in my savings!
Generally LTD provides about 60% of your normal income but it depends on the plan. Once I turn 65 (unlikely as I recently had my 60th birthday and my options are becoming increasingly limited in terms of treatment) I will revert to retirement benefits, government pension plus old age pension which should put me at about what I have coming in on LTD. The missing piece is the old age pension which I can’t get now. SF, I hear you on the change in plans… I fully intended to work to my late 60s as I enjoyed my work and wanted to maximize my retirement benefits. Best laid plans….
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Off to biopsy I go... grrrrr
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Molliefish, in your pocket with chocolates, good luck!
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molliefish in for late night pocket duty
Tany
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definitely in with the pocket duty.
Mae ~ how are the pups?
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Sadiesservant - you're right about the LTD. I don't have enough saved to outright retire and if I can get both LTD and SSDI that would be better. I am already vested in my progarm at work. If I have to go out on short term it will automatically roll over to LTD at 180 days and pays 66% of my pre-disability salary until I am 65. I think I am just not trusting the fine print. There are always little caveats and things that hang people up so I am getting the research done now while I am still able to work.
I'm just having a down day. I think part of it is because we have been cold and rainy for the last two days. I just thrive in the sunshine. I never really adjusted to the clouds and the rain and so it messes with my head.
Hope everyone has a good weekend. Thinking of Moth, and ShetlandPony too. In your pocket for the biopsy MollieFish.
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Emac, definitely read the fine print! I’ve had enough BS to last a lifetime but most of it was with my employer side. Our plans sound similar in that I was on short term disability for six months and then I switched to LTD. The thing was, at that point I was trying to continue working but full time was just too much. Square peg, round hole as the plans are designed for people who get sick, recover and go back to work, not people who get sicker over time. I was put on what they call rehab trial - first clue this was a poor fit. Not rehabbing from anything. The first blow came when I learned that I would not be entitled to leave, wouldn’t accumulate vacation and could not access my banked vacation while on rehab trial. Say what? I would earn 6% vacation pay on any hours worked so, after many years at my job I went from over five weeks of vacation to, at most, two weeks cuz people with a legitimate illness don’t need longer restorative breaks. Ummm.. right. Then the kicker, I was to get an annual salary increase based on performance - I was performing above expectations, just working fewer hours - but it never showed up on my pay. When I contacted HR I was told it would be reflected in my salary when I returned to full duties. Okay boys and girls… there is something you’re not getting here….
I’m actually in the process of pushing for resolution on these issues but am apparently “caught in a larger policy review”. They need to understand that this is a matter of principle and I will fight tooth and nail to fix this for others facing a similar situation in the future. But now that I am 100% off, even the nonsense of the insurance company makes me a bit crazy. I have to have my MO fill out a form every six months to confirm, yup… still has cancer, yup… still terminal. Good grief! So yes, make sure you understand every aspect before making a decision. Good luck.
Moth, sent you a note but my thoughts are with you. SP, hoping you are enjoying your garden but am worried at the silence….
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Here for pocket duty.
Thinking of you all.
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emac, I may have mentioned this here before but I can tell you that my disability plan deducted other income including my retirement payout abs SSDI (an easy approval for stage 4) which ended up being the same as my take home pay from working. STD was 66% and LTD was 60%, LTD became full disability after 2 years and pays out until I reach 65, which is extremely unlikely as I’m only 47 now. With everything combined though, it’s doable and now that we’ve sold our house without taking on a new mortgage or paying rent, I can actually live off the disability (only using some profit from the house sale to complete the cabin).
Also, can you retire early for medical reasons? I didn’t know I could until a well informed HR person told me.
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Here for pocket duty as well.
Got discharged a week early from PT as I had achieved all the goals in 5 weeks instead of 6. Pays to do your exercise at home!
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Well, I finished my 1st color by numbers and I’ll do the 2nd one I got but then I’m done. This one was hard and tedious and this just isn’t my thing. Time to do something else with my day.
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Nice picture Mae, I never had the patience for it either. I only recently did it for an app that would pay me a couple of bucks to do a certain number and doing it on a mobile device can be just as tedious. Hats off to Mel for being able to continue it and get some enjoyment as she richly deserves.
Not too much happening here, just cooking breakfast and have done laundry, mix of hand wash in the sink and hang dry. Put clothes pins on the door drying rack, clothes and shorts are dry already. Cloths and that went in portable washer and they are drying now.
Breakfast 1/2 cup pinto beans, baked until crunchy around 450 for 8 mins, baby spinach chopped a bit and using a small spoonful of caesar dressing mixed with a bit of mayo. Should be pretty good I think. Nice day here so will walk around the block I think. That is about it as the weather is quite pleasant.
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I love it!!! You did an awesome job! Sorry it’s not your thing. But it does look good. How are your puppies?????
I also am on social security, employers definitely don’t want to keep paying. They pushed me to apply for ssdi. It was tedious to say the least. But don’t give up you’re legitimately sick
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moth: I hope you are still feeling better physically and your head is in a better place too. I found the chart a bit hard to figure out other than, if I am reading it right, we will all be lucky to get to at least 5 years. As for those MBC drug ads --- I don't find 37.2 mths vs 29.5 (or something like that) all that comforting. 8 mths? I guess that is better than one month. It is sobering.
I always hope that the voices we don't hear from anymore are actually still with us, okay and living their lives. Some people just drop off. We know about the ones who posted their good-byes.
If someone wants to live in denial, that's okay. It makes their lives livable. Reality will strike eventually and they will have to deal with it then.
This thread moves like a raging river. I love it but I have to keep going back several pages before I can respond. Waving hi to all
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mae, that's awesome! I love it!
Carol
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Mae- love the picture. If I could do one I would try but my hands are constantly shaking (the whole body sometimes shakes). My daughter thinks I have Parkinsons but with Parkinsons you shake while at rest but I don't. I'm told it's a SE from the meds I am on. I hate eating in front of people because the food falls all over. Sometimes is worse than other times.
I know how dealing with employers can suck. The first time I had cancer I was on LTD with the chemo and after effects. After a year I had a phone call from the HR department who told me to get my ass back to work. I told her where to go and made a complaint. I don't think she lasted too long after that. The MBC diagnosis came when I was already collecting the Canada pension but working part time. I was almost 65 to collect the Old age pension so went on LTD until then at which time I retired. I am very lucky though because my husband is also receiving his pensions and a good pension from his job. ( although his first wife still gets $1000.00 monthly until one of them dies) He has been paying her for longer than they were married! Anyone know of a good hit man!!!
Anyways keep fighting for fair compensation from employers!
Everyone have a good weekend. My thoughts are with all.
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Living, I am presently on CPP which rises every year and ODSP which goes down so the total received is the same every month. 56.00 is taken every month because they overpaid me 4 years ago. At some point, I will no longer have drug coverage because the CPP will overtake the ODSP but at least from then on, the amount will go up and if I somehow live another 14 ish years, I will get the old age stuff and hopefully be in affordable housing as well. We will see. I do have some money set aside in savings and a trust account but I try really hard not to use them much. I pretend they are not there as much as possible. I try to live on the CPP ODSP. I did get an unexpected larger refund for what I assume is income tax this much which went straight to savings and then GST will be there in july which can go for groceries. My family and I have agreed no birthday or Christmas gifts to save money as well. Just possibly cards. Not sure yet. They know I am hanging onto my money for dear life.
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I applied for SSDI and was approved back in 2020. I was already drawing pension from my government job. Made about the same money retired as working...... until now. Inflation is hitting my budget hard. Gas over $5 a gallon; monthly utility bills climbing quickly; grocery bills up ALOT. Glad house is paid for but property taxes took a big jump due to increased housing costs. Scary times to be on a fixed income.
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I hear you Dodgersgirl. We have some of the highest gas prices in Canada. I was shocked to see that the cost of filling my tank has gone from $80 to $120 in only a few months. 🙄 I noticed my car service yesterday was significantly more expensive as well. But overall, I’m pretty fortunate so I try to ignore the latest economic hiccup. If I was thinking long term I might feel differently but given my life expectancy I think I’m okay. At least, I hope so!
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BTW… assuming your screen name is a nod to the team.., just watched the Dodgers hit a home run! 😁.
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sadiesservant—- I am watching the same game and saw that homerun, too!!
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