My Husband, My Life, My Love, My Family, My Cancer
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Tanya~Hello lovely ! Always good to see you here. Sweet woman! Hugs to you as well.
Ahem. Mae... hope you’re ok hon.
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So the good news is my MRI showed my brain is still stable. I am thankful for that.
I am irritated that it took 6 hours to have a simple dr appt and short infusion. I am also irritated that the Radiology dept in my hospital thinks it is reasonable for someone who is noted that gets diarrhea all the time after the contrast, should not want to reschedule when I am scheduled for another infusion. It is the week of Christmas so I will have to wait HOURS for my infusion. The woman who books them sounded irritated with me. I am keeping firm on this one, my drug infusion takes precedence over a CT scan and they are just going to have to reschedule the CT into the new year. I have always been stable in 4 years of scans, rescheduling my CT should not be an issue. I am NOT going to sit there at the Cancer Clinic dealing with diarrhea. No way no how. My stubborness will come in handy because although sometimes I feel like I am a difficult patient, I also know my comfort is important to me and I am not willing to cancel my cancer drugs. The Cancer Centre is closed 25th and 26th so if I tried to reschedule the infusion, it would push it back too far. I'll let you know what happens.
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Mara~Thats so damn awesome stable is wonderful.....😌🌹💗. A lot of People along the way in the medical field have been either really great. Or really really bad. Sometimes you just gotta stick to your guns. I totally agree with you. I cancel appointments all the time. Honestly, I've rescheduled scans before because I didn't feel well. I mean it's bad enough we have to deal with drinking that chalk ass stuff. At least they are finally getting a clue with the flavors. Now they taste better than dirty chalk. I am irritated for you..
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Mel, you are right about the flavour. Mine is not thick, it is this juice that tastes like week orange punch with the undertone of medication. I only drink about a third of it anyway. Can't handle more than that. I fully intend to reschedule the CT. My infusion is more important to me. I do feel less irritated now that I have had part of my supper, will have spinach shortly, wanted the protein first. On the plus side, I lost weight which was a surprise, but a pleasant one. Lost about 10 lbs, not trying to but do not mind.
Tomorrow I will have to start shopping for birthdays, DB and SIL let me know what they wanted and my nephew usually gets amazon. He can use that toward his cosplay. He takes part with a Star Wars group that usually visit hospitals. He also dresses up as Captain Jack Sparrow and does a dead on impression of Johnny Depp's voice in that role. He also does a really good Sweeney Todd as well. He is a chameleon and likes acting. Also does Spiderman as well.
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Mara~My stomach is very sensitive to those drinks, I have to make sure I go right home After, or people in public will Be calling me Poopy pants!!!!
I'm starting to really get annoyed with my bladder....., like seriously... if I cough a deep hearty cough, it leaks, if I yell or laugh really hard, it leaks. I know , I know it started before the cancer, but the location of my one met is s3, which happens to be associated with bladder function. So now it's worse. I am in that bathroom maybe 8 times a day and at least 2times a night while sleeping. It's driving me crazy. I honestly didn't even imagine that I would be dealing with this right along with cancer. Reaching menopause all on our own and dealing with a leaky bladder. Is quite enough, add in this cancercrap! Grrrrrr. I always have to make sure my Bladder is always empty to avoid issues.
Really making me annoyed Thats my rant for the evening!
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Thanks to all who came for pocket duty. You were fun to have around and hope you enjoyed my big nap in the OR. I had a little surprise, which I hope is good. BS told DH she didn’t remove any axillary nodes. She used the tracer dye, and I have an incision, so I’m guessing they must be normal again? Or why else? I know they had shrunk but still thought some would be removed. I’ll get more details at the follow-up in 2 weeks.
Mel, I like the fortune. For me my DH is my closest friend. But, as some of us commented earlier, you probably wouldn’t call ours a passionate romance! All is well though.
Mara, great news on the stable MRI!
Philly, hope your day with scans was ok. Hope the wait for results isn’t too long.
Booboo, so sorry about your piqray reactions and the relatives stay from hell. Especially bad if they happened at the same time. I’m not sure if they did. You seem to be ready to handle what’s next. I’m usually pretty calm but I think part of it for me is my way to cope.
Sondra, so glad you’re done with tests and treatments for a while. Relax and enjoy it however you can. I had a string of tests and bad results when I was diagnosed in January, then things settled down a lot. My treatment was an adjustment for a few cycles but either I got used to it or it’s gotten better. What treatment are you on, if I may ask?
Hello to others I didn’t mention. I read a lot and care about you.
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Mel..my bladder likes to act as if everything is an emergency. I say that often by the time I realize I have to pee, I AM peeing! I was not even remotely menopausal when I was diagnosed. Periods still like miserable, hellish clockwork. Onc said the tamoxifen would not affect my periods. Wrong! Stopped them dead in their tracks which makes me suspect that I am one of those people who is very affected by tamoxifen. Apparently some people metabolize it more than others, so some are perhaps more affected by it. At any rate, it knocked my periods clean off the map with one dose. Have not had a period since. Not a drip, not a dribble, not a smudge. Nothing. However... this has also meant a huge impact on my lady parts, which includes my bladder, whom I like to refer to as Old Leaky.
What helps me is an occasional, and I do mean occasional, smear of Premarin. Like, once every 6 months makes a difference. Maybe twice in a week, 3 days apart I'll smear a tiny blob around and I can tell in a few days that things are a lot better. I do not know if bio-identical or other hormone creams would work the same. And I know there is debate about whether this is feeding a hormone positive cancer. But really? Once every 6 months? I'm going to walk around with a sloppy crotch, old soggy bottom, leaky peepee because I think a smear of cream every 6 months is going to kill me? Forget that shit. Give me the cream! I find wearing soggy gonchies chaffes and irritates. Maybe consider trying some hormoe cream - the good stuff - every few months and see if that might help. Cause the only thing dripping should be the faucet in the kitchen, and even that makes you crazy! Hugs!
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I just realized I hadn’t checked in recently but I did not expect to be 3 pages behind. Nothing new here but I’m hopping in pockets
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Mel and runor, I am sorry to hear about your bladder problems. Those are just as bad as bowel issues like I had earlier.
I have resorted to wearing reusable menstrual pads. I feel more protected even though I have not had any issues for a couple of weeks. They are washable too so I don't have to worry about adding to landfills. I have iron control of my bladder but still not super confident in my bowel so after every BM, I take immodium. Not interested in waiting for potential leaks. Seems to work without constipation and it means I feel more comfortable in the day to day.
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Rosie~DH is my best friend as well, I smiled when I read that. But I meant it for our thread We support each other and we can talk about anything. However,I wouldn't trade my best friend for the world. Sometimes spending a long afternoon with her is the best Medicine for me, ive known her since 12 years old she was my neighbor and ever since best friends So for me I adored the fortune. Nothing or no one is closer to me than my DH. He is my person. I adore him...
Malinda~ I went back and read your post, I am sorry that your condition is bad, and it breaks my heart that you feel so broken in your heart about your love. Try to remember he loves you and is there for you . There is no crystal ball and a lot Of great medicines and treatments out there. I myself have been on Ibrance for what will be starting 38 month. So some treatments can work. Just hang in there and visit our little pub living room and let us support you. I'm sending you many hugs friend.
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Thanks for the cheering up ladies - I will give that laughing yoga a try later today
Suspect yesterday was just a Bad Day. Day 7 after rads and they had warned I could expect some worsening of irritation around that time for a few days, which I guess is what happened. Think I will give it through the weekend and then call the onc nurse on Monday if I am still having mobility issues and the other stuff going on. Stomach wise - going to try NOT having coffee + bran flakes for breakfast - that may have been a bit ambitious post pelvic area radiation!
Last night I turned off the internet, put on a much loved movie, and finished my felted snowman (he's cute!) and then since I was only a quarter of the way through Sixteen Candles, thought I would make the cat a new toy in the shape of a fish. It turned out a bit American Primitive/Naive art-ish or, more likely, just plain Bad, but he seemed to like it a lot and was chasing it up and down the stairs for a few hours.
Frisky - I saw the Sandra Tea on the FenBen thread and will give that a try as a coffee sub. I love a good tumeric tea and agree about inflammation and its impacts, and that of stress. I have wondered if all the stress I was under last spring (and girl, you should have seen the amount of coffee I was drinking then!) didn't just serve to juice this cancer through the roof and caused the adrenals to pack up too. Which goes to Moomala's point of just give it a damn break if you need to
Ultimately if you don't listen to your body and take a break, your body will do it for which I guess is how I ended up here. Ill look into that ashwanga stuff too.Rosie - what a great surprise to wake up to! So they didn't have to take out any nodes? Keep us posted..
Mara - congrats on the clear scan and for telling those hospital people how to do the scheduling. I thought I was being a good person by letting the diagnostic hospital know that I wasn't going to be able to make the appointment to hear about the second biopsy results and then finally just no showed the second appointment because there wasn't a point and was a waste of everyone's time. And yet Scheduling was just doing their job I suppose. Its that whole lack of joining things together that drives me nuts.
Philly - fingers crossed that the scan is clear and Candy - hope you can beat the constipation demons!
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Good morning everyone!
Sondra, happy to read you're familiar with Fenben and you're going to use the tea recipe Saulius posted...it's a brilliant idea to include all major cancer blocking spices in one brew...
I wish everyone going through tests, or like me, waiting for results, good luck! May we all get good news for the upcoming holidays!
Candy, magnesium at times works as a stool softener...milk of magnesia....
Oh, for those seeking great entertainment....FLEABAG was the best TV show this year, it won every major award! It featured a very complex woman, the type of character never seen before, because in my opinion defies conventional psychological understanding...still, very likable and great storytelling.
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good morning hugs to everyone who is accepting a hug today! 🤗
I am still waiting to hear about MRI results. Headed to meet a new PCP now. I’m in a like 3 week cycle of appointments here. Will hopefully be over and done with after the 16th.
I think I realized why I couldn’t stop crying at my one appt (aside from frustration). I accidentally took a double dose of lexapro. Whoopsie!! Also explains headache and upset stomach issues.
Oh the brain 🧠
I have been pretty impressed with myself so far that I haven’t messed up my pills in the past 2.7 years now. I know it is sooooo easy to do. And I do use the Ibrance pill sorter. Still messed up!
Much love,
Philly
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Sondra~Good Morning! Sometimes the best idea is unplugging everything, phones, the internet.... and break out the pop corn and just enjoy that moment. I am sorry you're experiencing discomfort from rads. From what I've read, they can certainly be bears. I'm sending healing thoughts.
Frisky~What channel carried Fleabag? I know it sounds familiar, but I'd like to check it out! Hope your day is a sunny good one.
Philly~ Hello lovely! I did that once with my effexor boy was I sorry. I felt like jumping out of my window. That can be powerful stuff when your dealing with those types of meds. Glad you figured that out. Still waiting with you for your results.
So far today, I've folded 3 loads of my sons laundry, washed a large comforter for my DSS who will be coming home for break soon from university of Alabama! Miss him so much. Also, scrubbed two full bathrooms.. I prefer the bathrooms to be clean. (Who wouldn't lol). I just love these days where I feel so good that I can actually do these things. I must pace myself. But it gets done. These are the days I cherish and that I feel semi-normal again. I want these days for all of us. And a lot more of them.
Hope everyone has at least a good day without so much pain. Love you ladies.
Mae~ Good to see you. Glad you're doing ok. Miss you when you're not around. You know me and my roll call. Lol 😜
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Mel...I saw Fleabag on Amazon Prime...
I'm impressed with your level of activities, good for you!
I instead, baked myself a pizza for breakfast from scratch, expect for the dough, and then I went back to bed exhausted after I ate half of it...
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Frisky~I owe it all to mister adderall. And it works wonderfully. I don’t know what I would do without it. Even days I want to rest. I just don’t take it. I feel good inside when I get things done Makes me feel useless o think is the word. Thank you for the mention of amazon to watch that I Do have that (Alongwith everything else lol)
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I am another huge Fleabag fan. Also love "Catastrophe" another witty/sexy British show.
For sleep and stress reduction, my Naturopathic physician has me taking my Magnesium and Ashwagandha with my Melatonin (20mg) at night. I take my night pills, and am right out within 30 mins. (If you are not used to melatonin it is wise to start on smaller dose and build up; take at same time at night.) Magnesium can be up to 1600 mg if you are constipated - it works well and is gentle.
Another really important thing for sleep is to get some sun early in the am with a walk around the block or something.. That and the melatonin really help you get into a circadian rhythm. Computers and lights can mess up your body's ability to know it is night time and release the melatonin we all make naturally. I got some yellow glasses I can wear when on my computer in the evening so the light is not telling my body "morning!"
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Mel, I do have adderall....it was prescribed during a clinical trial I was on, but I couldn't sleep well at night...maybe if I take just one pill in the morning it will be just enough to put some fire under my tush and getting me moving again...
Thanks!
Great suggestions Santa...I know they all work for me....I thought I was the only one overdoing the magnesium, apparently the recommended dose is totally insufficient for our basic needs....
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Frisky ~I take mine early also, it seems to steam out around noonish, but if I take another I do just fine. Today I was very productive, but I know I’ll be tired. I can’t imagine never having these. The fatigue would be too much. I’d sleep all day long. Maybe try a mower dosage? Also, make sure it’s not extended relief. hugs to you my friend...
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Hi Micmel, I see you roll called me. That is so sweet. This thread has been so busy. It took me awhile to catch up. I've been a little busy with the Holidays and my DH had to have another stint put in, it makes 17 now. Sometimes I think we are having a race to see who will go first.
We have my DH's nephew and wife coming in town for a visit in a couple of weeks. They are vegan, so menu planning will be interesting. I think we'll be eating out a lot.😊
Hoping everyone has good news on your scans!
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Simone~Gotta keep in touch with my peeps.. I always like to check on people that make an impression on me. I am Sorry to hear about stent number 17, it’s amazing how much the human body endures. I hope you both will have decades to come. Cancer plain sucks. I don’t know about vegan. So..... I can’t even imagine. What is it , nothing with a face? To eat?
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Micmel,
Yup, lol, nothing with a face, no meat, no eggs. I guess it's beans instead. Yum.
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Simone if you can swing by the library and pick up a copy of The Minimalist Baker or Oh She Glows, there are some really great vegan recipes inside. I have a family full of vegans, vegetarians, carnivores and celiacs so family dinners are usually from these books. Super easy and delicious.
Saw the NP today for my monthly check-up. She listened to my lungs and said all clear so its probably gerd making my voice raspy and have to clear my throat all the time. So Prilosec daily for three months. I take too many damned pills. Ugh!
I talked to her about sleep which has been awful on Afinitor/Aromasin. I wake up several times a night and it takes me forever to fall asleep. So she said thumbs up for melatonin and no magnesium just yet. I still have D from the amoxicillin I was taking for last week's root canal mixing it up in my gut with Afinitor. Gotta clear that up first before starting the magnesium. So I stopped at the grocery and my supplement person there, who is so helpful, turned me on to a fermented liquid melatonin that she said works really well and a spray magnesium that won't bother my gut while I'm waiting for D to clear up. My supplement list is growing but if it helps me sleep I don't care. I like that you call them night pills Santa. I now have morning , noon and night pills!
Loved Fleabag. I also really love the actress who plays the lead.
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Thanks for the suggestion Moomala. I really needed help with the vegan meals. I'm going to have to checkout Fleabag now that everyone is talking about it. I'm always looking for a good series.
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okay folks, I got a call from my mo a little while ago which is usually a bad sign, and in fact there's enough progression that a change of therapy is warranted...I'm moving on to Navelbine on the recommendation of JFL—my real MO....I'm kidding, but not completely!!
I'm not totally surprised by the progression, and yet I have none of the usual pains or symptoms, so boldly we go where i have never gone before to discover a new frontier....a new civilization...called Navelbine!
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Ah, that's disappointing to read Frisky. Let's hope it treats you well
Simone - also look at Cookie & Kate - all of her recipes have turned out well for me.
Moomala - in the past I have used magnesium in a cream form that seemed to work. I think I read somewhere that Mg is retained better by the body when absorbed through the skin, but I may have that wrong. Hope you find the magic sleep key from some combination, nothing worse than lacking sleep!
Was very saddened to see ABS's passing, although given her last post around Halloween I suppose it was inevitable. I loved the reasoning behind why she chose her name, and hope she is in a better place today.
I rested up yesterday and feel much better and am actually retaining food today, so that is good and seems as though the issue was coming from the rads effects. I was having onset within two hours of taking the I/L and no sign yet of gurgling. So thanks, Micmel, for the healing thoughts
And big news of today is that I managed to wash my own hair AND get half my body into the tub to hose down rather than wipe down from a bowl in the sink. Progress!Received a letter for an oncology appt next Thursday, so I guess instead of just bloods I get a doctor visit too, which is probably needed as I doubt I will be off these crutches by then. Frankenboob is hurting a bit, right under the nipple where Chad Tumor set up shop, so hoping this means SOMETHING positive is happening.
Hope everyone has a good Friday and weekend!
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#TEAMRUNOR
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This is where I bow out of this conversation.
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Sondra, I am so glad to hear that you are able to eat today and glad that you got even more cleaned up. That is so important to feeling better for sure.
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