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My Husband, My Life, My Love, My Family, My Cancer

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Comments

  • mara51506
    mara51506 Member Posts: 6,446
    edited October 16

    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.

  • goldensrbest
    goldensrbest Member Posts: 721

    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.

  • micmel
    micmel Member Posts: 10,049

    whoooooo hoooo at stable! Malle

  • chicagoan
    chicagoan Member Posts: 1,039

    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!

  • tougholdcrow
    tougholdcrow Member Posts: 153

    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.

  • malleemiss251
    malleemiss251 Member Posts: 575

    @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.

  • intolight
    intolight Member Posts: 2,350

    @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.

  • threetree
    threetree Member Posts: 1,630

    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.

  • chicagoan
    chicagoan Member Posts: 1,039

    Thanks threetree-I'll relax😀

  • cookie54
    cookie54 Member Posts: 827

    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.🍂🍁

  • mara51506
    mara51506 Member Posts: 6,446
    edited October 17

    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.

  • threetree
    threetree Member Posts: 1,630

    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!

  • threetree
    threetree Member Posts: 1,630
    edited October 17

    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.

  • mara51506
    mara51506 Member Posts: 6,446

    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.

  • threetree
    threetree Member Posts: 1,630

    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.

  • mara51506
    mara51506 Member Posts: 6,446

    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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