My Husband, My Life, My Love, My Family, My Cancer
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Dodgers~Sweetie, I’m so sorry you’re so overwhelmed. Is there someone that can go with you so the car rides aren't as taxing on you? Have you told them you’re having such issues with your balance issues and weakness?, use a wheel chair if need be. The volunteers at the hospital are there for a reason. If you can’t have someone push you. I hope that things calm down. I hope things work out okay for you. Communicate how you feel to them at the hospital so they can make things easier. I always say the more help you can get the better . Sending hugs.
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@micmel — thanks
Hubby will be with me. I no longer drive due to being on oxygen
I did explain all my issues to the person who called to confirm tomorrow’s appointment schedules.
And I will be in a wheelchair. Right now with wobbly legs, walking to the car is about all I can do.
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@rk2020 Praying as you start your new treatment. Glad it’s been a good experience with the treatment nurse.💓
@dodgersgirl chemo balance and other issues with bathroom trips are something I can relate to. Imodium is. A good thing. My DH knows I have falling risks so he’s right there with his arm to support me. Is there someone you can depend on to bring you to your appointment? I will be in your pocket tomorrow.🩵
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@dodgersgirl - When it rains, it pours. Caring for a parent can be taxing for the healthiest person. I hope you can feel my virtual hug. Do you have to drink the barium contrast for the CT? That can magnify diarrhea. 😞 Nonetheless, I will be in your pocket tomorrow with some Imodium, TP , wet wipes and an extra pair of undies.
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@shanagirl - thanks. Hubby will be with me. He helps me if I wobble getting up from my wheelchair.
@rk2020- thanks. No barium contrast. There will be IV contrast though. Hoping the lomotil(s) will stop the big D.0 -
@dodgersgirl
You have so much to handle right now and you need to vent so we can offer our remote support. You are not whining and we will all be thinking of you tomorrow.
It's really upsetting that medical staff are oblivious to how difficult it can be for us to get to appointments and tolerate the tests.
Will be in your pocket (along with a lot of very good company) tomorrow.
Hoping the techs are competent and compassionate and the scan results good.
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dodgersgirl, how frustrating! Trying to get scans scheduled can be a pain, even without "digestive" issues, wobbly legs and so forth. Do you have a Disabled placard or decal so that you can park closer to the entrance of the clinic? Thinking about or being afraid of falling is scary, to put it mildly.
In your pocket tomorrow for your appointments.
Carol
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@eleanora - thank you.
@sunshine99 — I do have a handicap placard. Local facility where tests will be also has valet parking. We will do that. They bring a wheelchair to the car!
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dodgersgirl Would you feel better using a walker or a quad cane for stabilization when you are out of the wheelchair? Thinking that may ease your worries in the future. I'm sorry your are going through a rough patch with your dad also. Ugh things seem to cluster together. I am squeeezing in your pocket along with everyone else here praying for strength and good results. Hugs.
emac Glad your feeling better!
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Hello ladies~ I’m heading to bed. It warm and I don’t like that. I need it cold cold. I know everyone is going through a lot. I don’t want to go through it all. But I do want to say we all understand somehow or another. I am totally here for pocket duty and wish we could really be there for each other. I’d love to sit and talk with you all.
good to see you Tanya. Always a pleasure.. does anyone remember Grannax? I just thought of her and wondered if anyone knew how she is doing?? Sleep well beauties !0 -
Dodgers girl, Definitely in your pocket. Hang in there.
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@dodgersgirl in your pocket for tomorrow. RK2020 has you covered with the Imodium and backups, I'll show up with something soft on the stomach, bananas or maybe just some popsicles? In seriousness, I am glad that you have help getting from A to B and I hope the day goes more smoothly than anticipated. In your pocket for positive results.
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Darn it lost my post. Let's see if I can remember.
dodgersgirl, kittycat and all who are struggling, I'm in your pocket and saying prayers for strength and healing. You all deserve nothing but the best care and a better treatment plan for stability.
rk2020, Oh it's so wonderful to hear about good quality care from your second opinion team.
Re: Low Dose Naltroxone I've been on this for close to 12 years. It's to be taken at bedtime and works with increasing endorfins into the body. This in turn helps to contain inflammation. I've forgotten so much about the drug but I do recall having problems with nightmares at first, so I took it in the morning. Eventually I worked it back to nighttime and do fine with it. Just remember you can not under any circumstance take opioid based meds. I worry the time will come that I will need to discontinue this drug and be left without any options for treating MS. I never felt it helped much with pain, but I'm stable EDS wise after being diagnosed 22 yrs. ago.
Our DD is not sure she wants to move to NC with her husband and our GD. Our DD and GD have been living with us 1 1/2 years. They aren't legally separated but he lives with friends after financial trouble left them without a home. I had hoped they would put their family back together again. She had a spontaneous colon death 9 years ago, when her baby was just 7 weeks old. Mortality rate is 85 percent, she was lucky to have great doctors and surgeons that saved her life. She now lives with an iliostomy and major physical and mental health issues, so she is not employable. We are the major financial line of support for the two of them as she receives very little $$ from her spouse and she did not qualify for disability. So for us, selling and moving is on hold for now.
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@cookie54 - I have canes and a nice heavy duty walker. I will use the walker this morning to get to the car. With wobbly chemo legs I have had 2 instances where I couldn’t stand up from a wheelchair on my own.
@wren44 thanks
@emac877 thank you, too
@irishlove - thanks
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dodgersgirl - joining the others for pocket duty. It’s rough to have those appointments spread apart like that. I always try to schedule them combined - it makes for a long day either way and I sure hope you don’t encounter bowel issues. Fingers crossed for good scans!
Waving hello to all. Happy Friday!
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Mel - I was thinking of Grannax the other day. I imagine she has passed, though, she was getting to what seemed like the end of her journey two forum changes ago, and was ready to move into hospice and/or enjoy the time she had left with her beloved family without worrying about drugs and hospitals.
Dodgers - whoa, thats a lot to be dealing with, especially Big D urgency and cramping. You DO have a plan though, take it one step (literally!) at a time and focus only on the bit you've got to do at any one point. You can do it!
Not much going on here, its still hot though my hip is feeling better. I just went for a walk around the (short) block - its stiff and muscle sore but moving better than it was a week ago, and I havent taken any drugs in about 24 hours yet either. Stopped at the bao shop on the corner and got three steamed buns for a lunch treat. With this heat and boredom I dont feel like eating much of anything. Hubs is off to a show tonight so I guess maybe Ill have a little bit of freezer pizza. Or just an apple like the last few nights!
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dodgers girl, so sorry you are being held back by diarrhea. Use 2 immodium at the start of the day before you get diarrhea , then one every time you have an 'incident', you should not be going 4-8 times a day. My son has IBS , and was told by his specialist not to worry about use of immodium, he has patients who use it daily for years, [for a variety of reasons ] and have no problems. I dont know anything about lomotil. I hope you can get relief soon.
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Reporting for pocket duty!
im very sorry to hear Grannnax wasn’t doing well. That makes me sad when people disappear. Thanks for letting me know0 -
Dodgers girl, you are not whining at all about major concerns dealing with GI stuff. Hopefully the immodium and lomotil keeps you safe. In your pocket sending you healing thoughts.
Sunshine, my cats are demanding. I can't feed once or twice a day as one eats too fast and gets sick, slow feeders did not work for him. They are spoiled, they get wet food smoothies, just add a bit of water, run through magic bullet and also dry kibbles, tiny portions through day. They are not fat so must be doing something right.
I am taking it easy, walked last night with older DB and wife, it was fun, always enjoy that. Today, breaking down boxes for recycle, coopted another blue box I forgot about, using that for other recyclables. Have to shred up some paper as well. Surveys and games for cash, laundry and who knows what else. Internet is OK today, if it craps out, reset modem, pretty easy to do, make sure the connecter is fastened. Considered taping it down but do not believe it will help.
Mealwise, planning to take a can of beans, grind it up with wheat bran, make a ground beef type texture and that will allow me to take my portions out a few at a time, store in the fridge. Breakfast may entail make a quasi pancake with pancake mix and an an egg and sausage chunks, make it in the sandwich maker and then add syrup, cross between a pancake and omelet I guess, I'll post how it tastes later. Another thought stirring in my head was to make a sort of mcgriddle by poking holes in my english muffins and spreading butter, adding some syrup and toasting them, put a sausage patty on.
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I am now hungry! Lol
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Sondraf
Glad the hip is feeling better.
I also like a large apple for dinner when the heat is affecting my appetite, but I smear mine with Nutella
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thanks for the pocket duty! I am it through both scans without falling. (Staff made sure of that. And no trips to the bathroom until I got home!
Now I am ready for a nap
Thanks again for support
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Good to hear, dodgersgirl! Glad you're home safe and sound.
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@irishlove I so hope you can somehow resolve your housing dilemma to satisfy everyone in the household.
@dodgersgirl what a relief that I was able to jump out of your pocket and bring all my emergency supplies home with me. Chalk up a win for Dodgersgirl!
@mara51506 your cats must be the most loved and spoiled on the planet
Warning, long winded vent.
Had my liver biopsy this morning. I usually get a nice cocktail of Versed and Fentanyl. I read up on my Enhertu pre meds last night and lo and behold one of the anti nausea meds is not supposed to be given with Fentanyl and it has a 40 hour half life. It can cause serotonin syndrome which can be be mild like shivering and diarrhea or serious requiring hospitalization or death. I’m VERY sensitive to all meds and I’m combatting enough side effects EVERY SINGLE DAY OF MY LIFE. I don’t need to chance mild or worse side effects. So I went to the hospital today and gave the nurse going over my meds the list of drugs I was given yesterday. I mentioned that the one drug should not be given with fentanyl. She shrugged it off and said she doesn’t know what any of these drugs are. When I told her what they were she said “oh, it’s just like Zofran so you should be ok”. And she didn’t even enter any of these drugs in my chart. She said she would do it later if she had time. Huh? She was questioning me on drugs I haven’t taken for years and yet the ones I took yesterday were of no consequence? When the doctor arrived, I discussed it with him. We decided to give me only Versed. No fentanyl. I was awake but didn’t care what they were doing. That’s all that mattered to me. Over the years I’ve had some amazing nurses but I guess every profession has their mediocre employees. Oh, and the pre op nurse said it would have been faster if I had let the lab draw my blood from my arm rather then waiting to get my IV/labs via my port in pre op. I told her my situation (one bad arm left and a port sticks beats multiple pokes or getting an ultra sound tech) and that we wouldn’t have wasted 25 minutes if the lab had only been given my paperwork. Instead I was forgotten in the waiting room only to find out they don’t access ports there. The pre op nurse came back later and said that I made the right decision for me. I know my body and thank God I’m not afraid to (politely) advocate for myself.
‘I’m laying in my lanai right now where I can hear the music from our community clubhouse/tiki bar. They are line dancing tonight. Normally, I’d be up there with the best of ‘em and getting more people on the dance floor. One more thing cancer has taken from me. And don’t suggest that I go there to socialize. I can’t be around music without tearing up the dance floor.0 -
Hi everyone, well im back in hospital in isolation again, just waiting for the kangarooos to turn up so i can take my holiday snaps. But seriously this is the last hurrah, i had the talk with Beck last night and there were lots of tears. I still have to talk to Darrin and Nicole but ill wait until I've gone home so they can decide to come over bevause it's over 3000klm i don't know howe far that is in miles. Happy to hear all went well for i think it was dodgersgirl. Take care everyone i love you all.
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Kitty~we love you too honey. I want to wrap my arms around you. I am so sorry you had to have a talk with Beck. My heart hurts. I just hope you go home soon.
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Kitty I'm so sorry you are back in the hospital again. We all understand how draining this disease can be and it all just stinks!!!! My heart breaks for you and your family , I wish I had better words. None of this is ever easy. We will all be faced with these dreaded decisions as we continue down this forced path that cancer has taken us on. I'm sending you big hugs, strength, peace and lots of love❌⭕️
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@kittykat9876 Im rather new to this board so I haven’t been following your story for long. I hope you get to spend some beautiful moments every day and special moments with loved ones. One cannot underestimate the power of being surrounded by love. You are clearly an important part of our community, so know that we’ve all got your back -even in your darkest hour. If I could give you any gift, it would be a peaceful heart and a pain free body. Hugs.
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Moring all, woke up with Pat/Sadiesservant on my mind…Anyone hear from her? My heart is aching this morning for everyone struggling here…..
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I hope this loaded, no kangarooos yet but the garden outside is very pretty, I really hope you can see
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