My Husband, My Life, My Love, My Family, My Cancer
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Mallee, I am very happy to know you are stable.
Cookie, I hope the program was informative as well as moving for you. Yes, I can see the ticking time clock thought for a lot of us.
Irish, it is pretty cold here today but we warm up again next week. Need to look up warmer pants and a hoodie.
Well, bought the last thing for the washer, too hard to pump water out manually. Bought a 30 dollar battery operated little pump that does 2.2 gallons per minute, I will see about that claim, if it does not work than the washer will just be dried out and unused and stick the 5 gallon bucket in for normal washing and wee washer as needed for cloths with extra cycles. I have also thought about the kitchen sink to wash clothes as well on washing board. I will have to see about all that. Only thing front of mind is that I will NOT buy a new washer and do not wish to go to the laundromat and use a washer other people do, kind of a phobia for me.
I mader rice, and lentils. Put a package of taco seasoning in. Sprayed the frypan and added the premade rice and lentils. Added the taco seasoning and too much water, let it all simmer and then strained the extra water, it was good and too simple but all I felt like doing. Took immodium before and after, I never want to get caught when getting cancer meds.
I hope everyone has a good day and in pockets always for everyone here.
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Irish - I would be panicking like crazy if our dogs got out. Thank God you found them thanks to a kind-hearted man❤️🐾🐾❤️.
Mel - praying for DD to have good results🙏🏻🙏🏻. What a merry go round of emotions for you this year.
Mara - don’t know how you do what you do. I’m exhausted reading about your endeavors. You are amazing. Actually, everyone here is amazing for dealing with this crappy disease. It’s a shame that no one else tells us that. I know we don’t want others fawning over us, but it would be nice to have someone simply say “what you’re going through sure stinks”.
Got our senior flu and Covid vaccines yesterday. Woke up this morning feeling zapped of any energy. Gonna be a do nothing kind of day. Hope I can summon the energy to at least get on the recumbent bike today for at home PT.
Here for pocket duty for those that need it. Sending positive vibes for all for better days.
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whoooooo hoooo at stable! Malle
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Good morning all! I am following along and sending good thoughts and wishes to anyone experiencing troubles right now, and cheers to those who've had good fortune, good scans and blood work, etc. I continue to just be extra fatigued, but especially extra brain-fogged. I read these posts and have thoughts that I want to share, but those thoughts just don't gel very well into something I can actually put into writing; not often at least, these days. I've been getting out and taking a good daily walk, and then take side trips over to the grocery store every few days, but can't seem to really do much else, ever since those last Faslodex shots. Now I'm going for my Zometa infusion later today, so not expecting to feel any better very soon. Thought about getting a flu shot along with the Zometa today, but just don't think I can do both at once - maybe I can get the flu shot later. I actually don't feel "sick" or particularly worse cancer wise; just real tired, extremely achy, and unable to pull thoughts together to actually form a plan and do much. I continue to think it's the drug side effects.
Well again, I do think of all of you, and follow along with all of your posts with great interest and concern, but most comments remain on the sidelines, unfortunately. We're having a mix of good and not so good weather here, and I am enjoying the switch over to fall. The leaves are turning beautiful colors and starting to come down, so that all makes my walks extra special. I also hear some different bird calls when I'm out there. I don't know much about birds, but I do know when they change their behavior, calls, etc. with the season changes. The flora and fauna changes with the seasons are some of what I like best out there on my walks. That and all the other walkers out there with their babies, dogs, smiles, and "good morning's". Thoughts are starting to loosen up now and all I'm seeming to be able to put down here now are random ramblings, so I'll stop. Just hope everyone has a good day and rest of the week - you are all the best and bring so much that is positive to my life these days. Thank you all for being here and being so supportive of one another. Mel - this group wouldn't have been possible without you; thanks so much for all you do!
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Mara-When you were relating all the problems you have had with your portable washers/spinners, etc., I was thinking if I were her, I would just get a washboard and do my laundry in the kitchen sink. I can remember that my grandmothers used to do their wash for the entire family in the basement laundry sink. They had a washboard and a machine called a Mangle, which was a type of wringer. Then the laundry was hung on a line to dry either indoors or outdoors depending on the weather. I am fortunate to have a washing machine but have never gotten a dryer. I'm doing laundry now and will hang it outside. I read somewhere that you can even dry clothes on the line in the winter until they freeze-then bring them inside the house on the radiators. Supposedly it makes the whole house smell very fresh. Looking forward to trying this. Good luck as you find a solution to your laundry issues!
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Mara, those heavy blankets are hard to wash. I bought two yards of fleece to put on top. The cats liked it and it was easier to wash and dry.
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@irishlove - so glad your dogs are home and safe, they must have been scared out of their minds to bolt like that. Thank goodness for that kind man!
@cookie54 - sometimes I think we end up normalising this stuff because if we took two steps back and looked at what we've all gone through/continue to go through we would think it was the most insane situation ever and why would anyone put themselves through that. Well, because we want our time on earth, damnit, and Ill take whatever I can get, even if it means going through some really crazy stuff.
Pretty wiped out today as rads finished yesterday, and the hospice district nurse came today at 11 when I was still in bed (thought it was next week!), but that was ok. She's arranging for my benefits to be sorted and paid right into my bank account (not a ton but it will cover Ubers to the hospital and my lymph guy), the PT/OT to come round and chat exercises and possible wheelchair use if needed to at least get out, and the social worker for everything else like emotional needs and will writing. So that felt positive at least to get those things in motion. Parents said goodbye yesterday after lunch and flew home today - frankly its a bit of a relief not to feel guilty any more at not being able to show/help them more and also not feel like we needed to entertain all the time. I think 4 weeks was just too long for them - 2 or 2.5 would have been better, but dad was adamant. They probably still had a good time all the same and Im overthinking things.
At any rate, I hope everyone is enjoying the fall colors where they are and getting ready for winter. Almost another year gone, hard to believe.
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A strange problem arose today after my bone scan kept getting delayed and was finally cancelled. I couldn't get another appointment for five weeks. It turns out that there is a shortage of iv bags because of the storms. Not sure whether this is just a local phenomenon or widespread across the country.
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@tougholdcrow, same thing in Australia. We have a major saline solution shortage and radiographer shortage, to say nothing about the medicines that we either can't get or are in severe shortage - people are not happy about it.
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Tough old crow, I am sorry to hear that you could not get your bone scan done due to the storms causing a shortage of IV bags. Hope you can get them in five weeks or less if they come in sooner. In your pocket either way.
Herceptin went fine, watched Deadpool and Wolverine for the billionth time. I appreciate the rides from Paratransit as well, never takes too long to arrive or pick me up. I am going to get Mcdonalds again, I am starving and that is what I want. Herceptin generally makes me really hungry. I will see what I want to order.
Cheapest meal that I could find was a cheeseburger happy meal with fries and apple juice and a junior chicken. It was really good and inexpensive.
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@tougholdcrow Sorry for all the delays. Those storms are causing problems across the country. Stay safe.
@sondraf Sounds like you are tired. Get some rest. Family visits are great but you are right they are so tiring.
@mara51506 Hang in there girl. Glad you were able to get in for your treatments and that paratransit worked well for you.
@chicagoan I wish I had enough energy to hang clothes outside. I am lucky to be able to transfer from one machine to the other. My DH does it most of the time.
I had my first oncology PT today. It sounds like they may do me some good, but we'll see. It was a bit of work trying to get all the appointments in for the next two months—twice a week. Fortunately for me I have two different offices I can go to although there are only two therapists trained specifically for oncology fatigue in each clinic so it was tricky. I won't get my excercises until next week. Today was all about baseline testing. I had my Faslodex shots and Zometa Infusion on Monday and I actually feel pretty good today. The nurse must have done everything right. This is the first time I felt this good after the treatments. And yes, they were able to flush my port with saline after. Still, tomorrow is another day. Amazing.
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Chicagoan - I remember my mother using a washboard and galvanized tub when I was a child - the bathroom sink, a washboard, and a drying rack. Then we moved to a rental house where the landlord had left the wringer you mentioned, so she used the washboard and wringer, along with the drying rack and occasional hanging outside. Within a year or so though, we got a washer and dryer and then had all that the rest of the time, of course. What memories! I would worry about clothes on a radiator though. Wouldn't that be a fire hazard? I can see putting them near a radiator to finish drying, but not directly on one.
Sondra - Sounds like you are at least getting a break - from the radiation and your parents' visit. Hope you get some good down time. I too am loving the fall colors and all that comes with it.
Tougholdcrow and Mallemiss251 - I had read a couple of days ago about how one of the hurricanes made a direct hit or something on a factory that produces IV solutions, and that is apparently at the heart of the problem. I went and got my Zometa infusion a few hours ago and I was concerned that they might not have the fluids I usually get with it. It makes my infusion side effects so much better. Well, I half expected them to tell me they didn't have it, because they need it for surgeries, etc., and my use wasn't that critical, but I lucked out. The nurse told me that they are on a "fluid conservation" routine, but all that meant for me was that they used two 250cc bags instead of one 500. That was fine with me, and I essentially got the usual, but it doesn't sound like all have been so lucky. I'm just surprised to read that the shortage has hit as far away as Australia too. Wow.
Intolight - Please keep us posted re the oncology PT. I'm really interested in how that works out. I told my oncologist that another person on this forum was going to be getting cancer specific PT and that I thought it was a good idea, and maybe my clinic could do something similar. He agreed that it was a good idea, but didn't seem to think there was anything in the works here for anything similar.
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Threetree-I've dried my clothes on radiators for over 40 years. I have hotwater heat-no electric near. My brother had a girlfriend from China. She said that was how they dried their clothes when she grew up. I'll do some googling just in case.
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Oh, Chicagoan. Sorry if I sounded an unnecessary alarm. I forgot that many radiators are wet, steam heat. I'm thinking of the "drier ones" that are only electric, I think. Yes, I've seen old cartoons and old tv shows, etc., that show people drying clothes on radiators, but I had never considered whether they were steam or dry heat before.
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Thanks threetree-I'll relax😀
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Hello lovely ladies~ I’ve been following along reading and feeling everything what it feels ten times more than normal. I’m sensitive and constantly upset anymore. I have spoken to my dear friends DH and my heart just breaks for him and their children and mil. He says things like I want my heart back. I miss my best friend. I’ve only broken down a couple dozen times today. My emotions are numb, I don’t know what I’m going to do. I listen to him and offer up what I can as far as friends go and encourage him that he was her world. Which she was. I then sat and bomb went off in my mind. I was getting a preview of my own life and my own DH and what may very well be a similar situation. I don’t want my DH alone he’s a wonderful kind man who I love beyond measure. We’ve been together 21.5 years and 8.5 of that had been spent battling cancer for me. With his hand in mind standing right next to me with his own special way of making me feel safe. My sweet friend had been battling 9 years and has 6 months on me of diagnosis. Am I looking into a mirror , will I get many more years ? I can’t bring this kind of grief to my family. They will be so hurt. So can we find the power to live and not let this awful beast ruin more lives. I hate it more the. I can express. I mean I miss my mom , yes I do, but she was 80 lived a decent life span. My sweet chelles mom has had to bury two of her daughters now. That sweet woman’s had enough. I hope they can find peace. I realize that if this keeps up I’ll have broken heart syndrome.( in case there are any bold and the beautiful fans out there ) just too much sadness.
glad the pups were rescued. In all pockets for scans and all. Other things. One good thing , I was accepted to the hospital’s compassionate care program for any bill balance left after insurance. Won’t be billed to me. I’m so glad I qualified!!!7 -
Mel thank you so much, I really appreciate your kindness.
I've been in limbo these past couple of months. since my last scan showed progression in my liver, I convinced my MO to consider local therapy. I admit it wasn't easy at all… it is not easy asking anything from my MO beyond his pre-written plan! it took 2 weeks and a lot of following up until he placed a referral, so I'll be seeing an interventional radiologist this Friday, see what he has to say. is it our job as patients to act as our own second opinion??? aren't we supposed to be informed of all options before any treatment changes? I am so grateful for this board and all the useful information, helped me learn so much about different options…Threetree, you speak my language! I don't know if the fatigue makes me overwhelmed or if I am fatigued because I am overwhelmed.
Irish, I loved it when you said "I am a tree Hugger".
Sondar, great news that Enhertu is working for you, yay!
SF, thanks for sharing beautiful photos and lovely tribute.
Tanya and Irish, glad you are safe from the hurricanes.
so Glad to hear from Carol! huge thanks to KBL.
Hugs to everyone
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malleemiss Congrats on stable as usual we love positive news!
Mara Agree, not a fan of laundromats, hope your new pump lives up to it's hype.
threetree Sorry you're dealing with such fatigue, it just stinks! Glad you're able to find joy in your day with the Fall foliage and are managing to get out for walks. I feel nature helps my mental health status and I hope it continues to lift you up.
sondraf Happy to hear you have a good plan developing to make life a bit easier. Yes, probably overthinking your parent's stay, they just want to be with you! Although we all do relate with your feelings.
tougholdcrow Ugh sorry scan got delayed, yep saline shortage everywhere. Hope they find an alternative and reschedule you soon!
intolight Glad to hear your have oncology PT set up and I hope it improves your stability. I am also interested in this, as I didn't know Onc PT existed. Fingers crossed that you continue to feel well after your infusions.
Mel I just find looking into my future so overwhelming. I also hate the thought of how my kids and DH will have to deal with my loss. As mother's we are protectors and I always have tried to soften the blow for my DD and DS especially. I don't want any of them to deal with this but obviously there is not a darn thing I can do.So yes back to the ticking time bomb sitting on our kitchen tables . It just plain STINKS! May we all find a way and the strength to live day by day. Hugs. As snow-drop said a big thank you for starting this thread and giving us all the gift of this online family❣️
snow-drop Kudos to you for advocating and pushing your MO for the opinion.Fingers crossed that you get positive news tomorrow. YES you did the right thing ! We are our own best advocate and we need to press and fight for every minute of our being!.God knows we ALL deserve it! In your pocket with an apple-cider donut tomorrow.
Hi to all here and keeping you all in my pocket for a decent day today.🍂🍁
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Chicagoan, I am fortunate to have access to a heated rack that has a tent over it to hold in hot air, can always pull it out. I do sometimes do that just because and fluff on no heat in my dryer. I have a plastic washboard with ribs that I can use as well.
Today is recycling day, got a lot of it to go out so will work on that. Washing in the washer that does not drain, it is faster to use vs. the wee washer, bathroom sink will be the rinse and softener station and spin in the panda, get all into dryer after. My battery pump is arriving today, hoping it works but if not, washer goes in closet and pail brought out for wand washing instead. It will sit in the closet until older brother hand is healed up. I am still not going to buy anymore washers either. Too much money and I do not even trust them to work.
Getting together all the recycled boxes which will take a bit but that is fine with me, supposedly shopping with db and SIL, we will see, I have 20 dollar credit on my shopping card which is fine, also need to get some extra bus tickets for Paratransit, wish they were set up to take the online smart card so I could add funds that way.
Edited, I was so darn hungry, settled for an english muffin with butter and shred cheese and made an egg in the mini griddle after, added some mayo before the egg and it was quite good. Should open the beans and make a dish in the frypan. I do have a couple cans of chicken pot pie soups. I will see later.
I hope everyone has a good day, in pockets for all.
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Mel - I am so feeling for you! OK now, in no way at all am I trying to invalidate or "pooh-pooh" here what you are feeling; I get it, and it's real for sure. At the same time, are you taking an anti-estrogen drug? I imagine that you are. I took Letrozole for awhile and now have fulvestrant. Those darn things can make everything I experience 50 times more emotional than they would be for me under normal circumstances, and I am "naturally" a very emotional person. I can cry and get bummed very, very easily. There's no question you have experienced more than usual or "fair" amount of loss this last year and your emotional response to all of this is very understandable and moving. Just wondering if you have considered whether any anti estrogen drugs are making this any worse for you than it might be "normally". Not that it would make any difference, as "it is what it is" and we have to take these drugs and experience life events as always. Again, I know that for me these anti-estrogens cause exponentially more deep and sad feelings than normal for me, and knowing that about myself can help on a certain level. You know what's going on with you, of course, but I just wanted to throw this out there in case it resonates on any level at all with you. Sometimes just knowing an additional piece of information, possibility, etc. can help us with insight and understanding. Does this make any sense? Please know that my heart is with you and I really wish there was something that I, or someone else here, could do to help you wade through all of this in a better way. Hugs and peaceful thoughts for you!
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Had my 4th Zometa infusion yesterday with the IV drip (thank goodness they had some sodium chloride available for me, given the shortage), along with the drawn out 45 minute time frame, and I'm at least not having all the chills, body aches, and fever that I had before. I am super lightheaded and dizzy though, and feeling rather faint sitting here at the computer. Woke up at around 3 am and couldn't get back to sleep - not at all normal for me. My blood pressure is on the low side, but not alarmingly so. Maybe after I eat, I won't be so dizzy and lethargic. I'd just like to finally have one of these with the "no side effects" that many don't seem to get after that first infusion. Ugh! Such an unpleasant drug with questionable efficacy.
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Threetree, I am sorry to hear you are dizzy and lethargic after you infusion. In your pocket for that to go away. If you have them eggs or beans may be helpful to lessen the dizziness for you. In your pocket.
Mel in your pocket as well, you have definitely experienced great losses in the past year. Sending my support your way.
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Mara - Thanks for the good wishes. My eggs are way past their "use by" date, but I think I might have some beans around that could be part of lunch. Thanks for the suggestion, I hadn't thought of any particular foods. I did eat breakfast and am feeling a bit better after that. Just a little lightheaded, achy, and "out of sorts", but still better than any of the other infusions so far. I use a "happy light" and I think that might have added to my lightheadedness this morning, as it can cause that on it's own. Combined with the Zometa, I think the effect was just a bit stronger. Hoping to actually be able to walk a few blocks up the street a little later and get some copying done.
Good luck with your washing. Can't believe everything you are trying and going through, just to avoid the laundromat. Laundromats are a problem in their own right though, and I haven't been to one in years. When I can't do something here with the machine I have, I just break down and take it to the dry cleaners and let them deal with it. Expensive yes, but saves me some serious stress - and possibly ironing.
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Good news, the battery powered pump is working well, I will be able to do laundry and drain it out quickly as well which makes me quite happy as well as saving all the towels that I was using before. 30.00 for the battery powered pump and the 30 dollars spent on the two manual pump, still less than it would cost to have replaced the washer. I am happy currently but we will see what happens.
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Went to an evening Halloween themed event at a nearby estate/gardens kind of place - full harvest moon over the grounds was the highlight!
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Sfcakes, that Halloween installation is really cool to see, I bet kids are loving it for sure.
Slept well, bought a lot of junk food when shopped with DB but no regrets, will portion a bit at a time for myself. I got more caesar dressing, 4 giant pot pies, going to make one up and decide how many meals to split them into, got some baby spinach too, use that for a salad feel, more english muffins for egg sandwiches. DB cannot use right hand but boy is he strong, he put my niece's 40 lb cat food in with one hand. His hand does not seem to have slowed him down, unable to do gym but can still walk the dog.That is one stoic dude, nothing like me but that is OK.
I am doing laundry and using the battery powered pump, does empty out most of the way but I can dry it with a towel as there is hardly anything left. No spinning, that does nothing that wringing out wouldnt do, using the panda for that. Got normal chores to do as well. Still a bit tired from Herceptin so one at a time today for chores today. I just may wring cloths out as well as use the Panda. Overall satisfied with laundry needs I have for myself.
As far as food, going to open up the meat pies, big one, cook it up and divide up into smaller meals. Possibly make extra rice, egg and bean chopped up with croutons, take some cheez whiz and other seasoning as well, cook up in a pan. I will see what I decide. Edit, they are very big, three meals at least, nice part, once they can be put in the fridge, can make whatever I want to add or add some baby spinach I picked up as well. I will have the bean meal for dinner, figure the big meat pie will stay in fridge two to three days.
Edit, cooked a large meat pie in microwave, would have taken an hour in the oven but it only took 6 mins, once it cooled, scooped it out. I took about a third of it, put some baby spinach and croutons on top. Used caesar dressing as well, not too much. That meal was really good tasting for me and was full after eating. Rest of the meat pie is stored in an old cool whip container since it is air tight and I will decide later what to make with it or just save for tomorrow.
I hope everyone has a good day, in pockets for everyone who needs me as well.
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that place looks awesome !
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SFcakes - Thank you so much for sharing the photos! That is the coolest Halloween thing I've seen so far this year. That must have been so fun to go there.
Mel - I so hope you are feeling better today and finding at least a little peace. Maybe a relaxing week-end will help.
Mara - Male physical strength never ceases to amaze me. I gained a special appreciation for it a few years ago when I had to move to a different apartment here in my complex. Boxes that a female friend and I couldn't even begin to lift with two of us, were just easily and casually hoisted with one hand, onto the shoulder of one male mover who brushed off our admonitions to him to be extra careful, because that particular box was ridiculously heavy. I think the guys get it in the physical strength department and the women win the emotional strength award.
Hope everyone is doing well and looking forward to a reasonable good day.
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@sf-cakes, those photos are amazing and the moon added just the right touch. Some real time and effort went into that display. I hope you had fun.
@mara51506, you are far more adventurous with meal recipes than I am. I am glad the pump is helping laundry matters.
@micmel, as always I think of you and thank you for providing this thread and enabling me to meet the lovlies who frequent your porch.
In everybody's pockets with support.
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sf-cakes - thanks for sharing those photos. The moon really set the scene🌕🌕. What a fun place to visit.
Hope everyone’s weekend is pain free and peaceful.
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