My Husband, My Life, My Love, My Family, My Cancer
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I'm here, in Mel's living room, with tears in my eyes once I read the news of losing our Shetland Pony. I still can't believe it even though she hasn't been around for a while and I was getting this strange feeling. This news, this sad, sad news....
Sending hugs to all.
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I'm catching up with three pages of posts.
Mara, I'm glad to hear you remain stable. It gives us hope.
Mel, I hope you remain COVID free. I'm so sorry that your dss has it.
Oh, Shetland Pony… May she rest in peace. Praying for comfort for her family. Damn this disease!!!
I'm continuing to follow moth's blog and looking for her posts on IG. Moth, if you see this, I hope the "bottom" issues are resolved or at least getting better. I hope your team provides you with everything you need.
Carol
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Oh how I wish Mel's Living Room was a real place. Where we can go and talk to each other sitting on the couch. I need to hear everyone's opinions on this...
It is a hot, sunny July day here in Illinois. The temps are near 100 with the humidity making it feel even hotter. I am lounging in my cool air conditioning house, reading a book, with my cat near me. I look out the window at the neighborhood. It is a weekday afternoon. I think of people going off to work, doing errands, going on vacations, living their lives.
Then I think "am I letting my life go by?" "Should I be doing something?"
But then I think "I am enjoying the peacefulness before the storm". The "storm" is when the cancer gets worse. When I have to go to the cancer center more frequently for IV treatment, instead of the pills I take in the comfort of my home. The "storm" is when I am confused -- like Moth-- from the liver failing and I cannot understand my books any longer. The "storm" is when my life gets harder dealing with the cancer, when I know that my time here is short.
And I then think "it is ok that I am doing nothing and letting the day just quietly slip by".
But, is it really ok? Should I be doing something? Or, am I being lazy, am I being a hermit, and wasting what time I have left?
Thoughts????
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I am so sorry to hear of the passing of Shetland Pony. I send my condolences to her family and friends.
Candy- living one's life is different for each person although each of us has been thrown into what seems like the "eye" of the storm. Our lives has been changed in so many ways. You have to do what makes you comfortable and peaceful while at the same time not lose the power to enjoy the things you can still control. Hugs to you.
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Candy, speaking as an actual hermit, I don't just play one on TV, I question whether I am lazy or whatever but I choose not to leave the house as it is hot here too. I pass out way more easily than I used to, I can get to places by bus but the walks to the bus stop are HOT. If you are comfortable and enjoying the reading, there is no need to do something else. If there is something else you want to do, then do it. If you are comfortable at home reading, doing the treadmill etc, do it. Do NOT feel like you have to be doing stuff just to make your time count. Every moment counts, even the times we stay home. I mostly stay home as I have apps, mobile games and surveys that help buy extra groceries or devices that make me happy. Other than the young and the restless, I don't have much I watch beyond youtube aside from streaming movies.
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moth can be found on Twitter as “indefatigable. She's having a terrible time right now, as everyone knows.
More here on tumbl:
https://nevertellmetheodds2017.tumblr.com/post/690346753584676864/a-timeline-of-all-the-shity-stuff
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Candy - only you can decide what is right for you. I asked myself, if I got too sick to do anything tomorrow (or 3 or 6 months from now) would I regret staying at home? And I also asked myself, if I went out and about (with whatever precautions I felt appropriate) and I got sick, would I be kicking myself (and really regret it it)? Whichever answer you can live with is what is right for you. There is no right or wrong.
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Well, went shopping. Enjoyed the walking, got a couple costco things, and two other grocery stores, it was fine. I didn't talk much as DB, SIL and niece were talking about camping and travelling to Toronto on Saturday. As I listened, I realized that I could not have ever been that busy. Totally different mindset for me. I like having less stuff to do or sit and do surveys, just have to incorporate some exercise or bus it to a mall and do some walking thru the mall. DB was not sure if they could do groceries next week and I tried to say, take a week off, I can manage but I think he will just find another way. I do wish they could just take a break from me and do their own thing. I can easy get on a bus and pick up prescriptions etc, go to walmart or whatever I need. I have no real time commitments.
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welcome traveltext thanks for the information on moth. We are all very worried. Hope you’re doing well.
Candy~honey, no way are you waisting your time. Being comfortable is so important. I am also the same way, I run errands two times a week perhaps. Not long ones. But I can honestly say I am always ready to get back to my zone. My comfort. We’re it’s the only place I fully Control things. I love being home most days. Especially since I’ve found painting. Hours fly by. Slowly my gastrointestinal break down is healing. But boy oh boy. What a difficult thing now to worry about Covid. Ugh one thing after another. Hope DH doesn’t get it either. Odds are though we may. When my Son had it two Christmas ago no one else In the house got it. So I’m hopeful. I am still gutted about Shetland. Damn cancer. Miserable piece of crap.
hope everyone is doing ok. The loss of someone brings us back to reality with this shit disease. Hugging to all of you. And I wish the living room was real also. We’d never be alone0 -
When I think about what people on the site are going through with losses, SE of drugs, progression, real life pain, not just cancer pain or mental pain, it is enough for me to kick myself and say, how can I be depressive as much as I am, no excuse for me. I don't get anything besides disability but it appears I am not being booted from the apartment, I do have a strong body and am stable, I know how to make a few dollars a day extra which really helps considering my grocery bills are not particularly expensive.
I tend to get wrapped up in my own head thinking DB and fam ignore me, but the difference is the lack of activity for me to talk about. They are simply busy people with each other and do lots of stuff, I need to distance myself from that thinking as I do not feel they need to change their behaviour. I need to be grateful for what I have, you guys, my FB friends who are happy with my update and let others enjoy what they do in their lives. I must say, I really don't want to do a big Christmas dinner, I would prefer being alone. Don't think older DB will go for that.
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Christmas shhhhhhhhhhhhhhhhhhhhhhhhhh!!! Ugh!
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Christmas! We are having Christmas in July on the 30th with everyone we can get here. My mil will be 80 in Oct this year and she’s hinting at wanting to join a seniors community. She’s lonely. It will be nice to have them all here in the back yard. We haven’t been all together since 2019. It’s different for everyone I think. we are going to have turkey sausage with ketchup to make up for cranberries. And give the wee ones their gifts that have been wrapped for Christmas 2021
I’ve got surgery booked for 11 august for a ‘lumpectomy’ but there is no lump. Going for the seed placement some point prior to that. I’m not stressing about it. What will be will be. Love to all.
I’m sorry to hear about Shetland pony. I remember lots of her post from when I first joined. Like someone else said, there are many girls I’ve met on here who have left us. I can only hope they are happy and pain free where ever it is we go when we leave xoxo0 -
Mara - I agree with Illimae, do not ever feel guilty for posting stable or reduction. We all need good news and to see it’s possible. I really think it is just a crapshoot. Perhaps you can just go for awhile at Christmas? Or not. You do whatever makes you happy. I’ve been staying at home on New Years Eve since college days. I just want to be at home alone in my PJs with some tasty food, a bottle of champagne, and good movies. Everyone thought I was weird at the time. I didn’t care.
Candy I too feel the struggle between “doing something” and just sitting here. All I can advise is do things you truly enjoy. I enjoy cookbooks so just checked out a bunch from the library. Other than that I feel like I’m just taking care of business, cooking and curbside shopping on a budget, calling docs, disability insurance agents. It’s a real struggle feeling like I should be doing more.Sometimes I break down because I don’t feel “useful” without my job. I know I need to take it easy on myself. That’s what I would tell any friend in my position because that’s the truth.
I’m sad to hear of ShetlandPony. This disease is awful.
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Candy-678 - I think it's good you are asking the question of yourself and seeing input. I do that too just so I can keep perspective on things. I think the most important opinion is yours though. You have to do what you feel comfortable with and makes you happy. I like the analogy of working through the storm. Definitely some of us are in the eye and it will inevitably get worse. I personally try to keep functioning as much like the old me as I can. I know that while I have bone only mets this is my best shot at doing that. Even so, I'm still learning how to deal with the disappointment when I can't go as hard or as long in activities like I used to. I'm really working on not seeing my restful days as wasted time. I think if you are happy inside reading with your cat, do that. If you need something more try pushing the boundaries slowly and see where you end up. I probably am not one for advice. I sometimes feel like a bird that keeps flying into the same window believing next time I will go farther. I'm not quite sure how to get off that crazy train. I think what I'm trying to say is that I think all of us here can identify with your struggle in some way. From what I've read here we are navigating that in ways that work best for our situations. Hugs to you, I hope you stay cool in the heat and have a good book to enjoy.
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Kikomoon, I think last night was just the insecure, depressive side of me thinking that because my family all mostly talk to each other, they don't care for me which in hindsight is really stupid. If they did not care, why on earth would they take me shopping every week. Not sure about Christmas yet. Might ask about going to a restaurant for the Festive special or something with DB and SIL and though we are not exchanging gifts, I will still ask for grasshopper pie on my birthday instead of a dinner. I will keep reminding myself that the thought no one cares is really, really false and just keep doing stuff that makes me happy.
Not too much happening here, the usual mobile games and surveys and laundry, got some new cloths that I get to wash, it is wonderful. Will be waiting for the people to come put in the keyless lock on my apartment door. Also have to look into picking up mail at some point as well since it cannot be delivered.
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Thank you all for your thoughts and advice.
I am not a "summer" person, never have been. So with the high temps-- this weekend supposed to be 110 feels-like temp with the humidity-- I am ok with staying in the AC with a good book. But, if the weather was cooler, then I wonder if I should "push the boundaries" as emac said and do some stuff. But.... alas.... Covid. Stupid Covid. I don't want to get sick,, and I have a 96 year old father that I am around some and I don't want to get him sick. So my "hermitness"--is that a word-- may be smart due to the germies.
I don't know. I just get anxious/bored sometimes and wonder if I should do something and not let my life just slip by.
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I have always been more hermitlike, even in my younger years, happier to stay home rather than go out a ton after work. Even as a teenager I did not go out every weekend, I had friends that I said hi to and socialized at work or school but never was asked to go anywhere so got used to staying home. DB has always been more busy socially and had a lot of friends he still sees to this day. I accept my lifestyle now and am not unhappy about it, when I do go out, I go myself.
I did have a good time shopping last night, in 3 stores, got 4500 steps which is pretty good so there is that. I bought corn flakes after reading they are high in iron, decided to take a cup, grind to a fine powder in my grinder and put the cornflakes in cooked white rice for iron, peanut powder for protein and combine with caesar dressing, low fat mayo and seasoned with italian, onion and steak seasoning. Sounds weird but was delicious and not too high in calories either. Still waiting for the people to come replace the lock on my apartment door as well.
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Sending love into the universe for ShetlandPony, her thread about 'when is it no longer just side effects' was one of the most honest and sobering I've read here. May she be at peace and her soul fly free.
I also wonder about am I doing enough, can I just sit here and read a delicious novel and drink tea on the days that I'm not working, and, as Candy said, let the day quietly slip by? I'm often grateful for these quiet days, but I do feel guilt sometimes, like I should be out protesting (there's so much to choose from these days, lol) and marching around shouting. But I don't have the energy for that anymore. I'm trying to not be too hard on myself, and appreciate that simply being here and trying to be kind and compassionate with myself and others (not always easy) is enough.
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I love the keyless lock installed, it works quite well and is good. I really like the colour as well.
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Mara- I love how you appreciate the small pleasures in life!
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Mara and all you other lovelies. I may not say how thankful I am to read all of your worlds here to trust that immediately we understand and care so much as if you were my neighbor. So I’m sending hugs of appreciation to all of you. Life is short.
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I was so sad to hear of the loss of Shetland Pony I have taken a few days out from BCO. It did not help me much. I read with interest everyones news :good and bad, issues with health and life in general. I missed you and your understanding and compassion.
mara thank you for your positive news, stable mabel , relish every moment, long may it continue.
candy, I think you mentioned boredom in one of your posts, I think that is when your mind has chance to 'play tricks ' with you. I know I feel worse if I am ' wasting time' sitting watching tv or reading again! I have recently rediscovered knitting, something I have not done regularly for 25 years .The challenge of remembering techniques ,looking up patterns etc has really helped me mentally. I am going to donate the baby stuff I like to knit, so it has a purpose too. I hope you find comfort with your lifestyle choices.
Sending good wishes for the weekend.
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Thanks for the shout out, SeeQ. I am in the same boat with others who are struggling with pain management. I lost another 10 pounds (I’ve lost 65 pounds so far) and my onc has no idea why. I have continued with my Faslodex shots and will be scanned in August to see what’s causing the pain. I think it’s progression, as expected, but she thinks it’s the sarcoidosis that’s causing it. We’ll see if the PET scan reveals anything. The hard part is that cancer and sarcoidosis look alike on scans, so it’s difficult to know which one it is.
I am so, so sad about Shetland Pony. She has been a regular here for a long time. May God surround her family with peace.
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Good Sunday morning all, has anyone heard recently how BevJen is doing?
Took an early morning walk and picked up two books at a little free library that a neighbor built next to the walking path. It was very pleasant walking at 6:30. But, later today and tomorrow are going to be very warm and muggy. I grew up in NW Ohio and when I first moved to Maryland (DC suburbs) I hated the high humidity. But, gradually got used to it.
Might go visit my daughter tomorrow and hang out at the pool with the grandkids.
I hope everyone who is struggling with pain can find some relief and comfort.
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I don't have too much planned though I am going to go over to my pharmacy to pick up a prescription. May walk part of the way depending on how the bus is running. Still not taking chances with the heat. Tomorrow, will have to check my mail at a depot nearby, the mailman cannot deliver here until the outdoor box is fixed, property manager yesterday said they are waiting on parts so hope it is soon. I don't get too much in the way of mail so not too concerned on waiting.
It is warm and muggy, temps feeling into the 90's, might break 100's into the start of next week. It has not bothered me much since I don't go out much but I am careful. Decided that if I walk to the grocery store nearby, will bring my walker as it will hold groceries and I can push vs pull and sit down as needed if hot.
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Morning all.
Not much here. Going to be a hot weekend with feels-like temps around 110 degrees Fahrenheit with the humidity factored in (very humid). I am doing laundry today,, and reading of course. I do love to read. I always have. So it is a good activity for me. And I watch the Jeopardy game show to help exercise my brain.
I guess I just let the inactivity get to me. I used to be "going". Work, church, shopping in stores (now mainly online), yardwork. Now, I am more sedentary and so I feel like I am wasting time. But, with the cancer, and the arthritis, anymore I cannot/don't feel like being so active. And, Yes, I have more boredom and that messes with your mind and emotions.
But things can always be worse. Boredom is not the worst thing, we all know that.
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Candy, only stuff I am doing outdoors today is picking up a prescription, will take the bus most likely and then if bored, may go to the grocery store, walk the aisles. Have decided that I can afford to get peanut butter since I have cookies in the fridge from a couple of weeks ago. Laundry also being done as well as mobile games for cash and surveys.
Breakfast is beefless ground warmed up in frypan on low, spinach and corn in same frypan, taco seasoning on top as well, when they come out, put a bit of bran for extra fiber and queso, went back to queso as an additional topping which is not full of calories either. Yesterday just ate rice in the morning and had chocolate milk which filled me up making me miss supper. Not good. Doing better today for eating.
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Well, was stupid and lucky. Getting to the pharmacy was fine but by the time I decided to head home, I was overheating. A couple of nice ladies heard me breathing hard and I was lightheaded. One of them gave me a ride the rest of the way home which was about a 10 min walk. I was very grateful. Going forward, will be using the walker when hot to always have a place to sit. I would have been OK but no place to sit and rest in the shade. Woiuld have taken the bus home but it was going to be an hour.
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Oh mara, I'm so sorry. I'm glad those ladies saw you were in trouble and gave you a ride home. It's so discouraging to try something, and then have it not end well. I hope you're resting at home.
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Following the discussion but haven't been posting much. I'm so sad about Shetland but have been worried since she hadn't posted in so long. I'm not sure which is worse, knowing that we have lost someone dear to us on these boards or the silence and not knowing… It makes me even sadder to know that the disruption of the Community Forum meant that we weren't able to support SP in the last few months.
In terms of activity, cancer is such a funny beast. I have been feeling a bit guilty lately that I am no longer working (stepped away in April) as, overall, I feel okay. I fill my days in the garden, walking the dog and working to get rid of all the excess (many years of collecting antiques plus a lot of family stuff). There is some pain and a few other issues but if I pace myself it’s doable. I had a wake up call the other day when I took my other clothes shopping though. Two hours at the department store helping to pick out items and helping her to try them on and I was completely shattered. It’s so easy to forget our limitations when we’ve learned to pace ourselves. Push the envelope and, oh oh! Not feeling quite as guilty today! LOL.
Thinking of all who are struggling and sending good thoughts to anyone with upcoming tests. Hugs to all,
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