My Husband, My Life, My Love, My Family, My Cancer
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Candy - Glad to see you are pursuing the yoga - its all about what you can do and not what you think you should be doing based on the 22yr old Instagram influencer who owns a pair of Lululemon yoga pants and an iPhone. Dont worry about "getting" meditation right away - it takes practice to be able to park your brain and tune everything out. It IS possible,though,and it is amazing what the brain can overcome with extreme focus. I once managed severe nerve pain through meditation (I was seriously desperate that weekend) but that was after a few weeks of daily guided meditative practice.
emac - Hello! I was wondering what you were up to. Glad you stopped by for an update!
Mara - Ontario has had terrible numbers recently, I am surprised they haven't shut down sooner. Hope it gets under control for you.
Boo - so sorry to see your progression, especially o top of everything else you have going on in your life. Take care of you and your needs while you work through next steps.
Regarding non Stage IV death and dying thread - I think a few are sprinkled around in Life After... but nothing solid where people talk about fears. Perhaps that is something mods could consider adding.
Not much new here - I got my second AZ this afternoon, which needed to be moved up a few weeks due to pending surgery end of the month. Waiting to see what that does to me as the first shot was so tough. Feeling a bit tired, but its 8pm and I've been on the go since 630am.
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Hi all, it’s too warm out (81 degrees) for a walk, so I cleaned the kitchen, I love when the kitchen island is uncluttered.
I also had a phone interview about Tukysa (part of my current chemo combo), this was the 2nd in 2 weeks as the pharmaceutical company and advocates are trying to get the drug approved in Canada for treatment of brain mets. It’s too early for me to confirm how well it works but I do believe people everywhere should have the option.
I plan to try a simple baked cod tonight with asparagus, the last recipe I used wasn’t great.
Other than that, it’s a pretty relaxed day, DH and I are going to find a movie to watch later tonight.
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runor, PM mods to find out what an equivalent early stage death and dying thread looks like. Let mods know if they are not up to date what you are going through. Either there should be an earlier stage thread you can participate in or ask permission to participate in the stage IV thread and ask them to put an announcement that this will happen. People who are facing something potentially fatal should be allowed to get help.
Wow, I really overdid the walking today. I walked half an hour to the hospital this morning, my meds were taking a long time so walked about 20 mins around the hallways until the nurses called me. That was fine because I sat around so long. The issue became one of I wanted lunch from the burger joint after chemo. I have no problem walking the half hour home BUT the walk from hospital to burger joint to pick up my meal and home was 7km. I was fine walking most of the way there but on the way home, the effort was difficult and my breath became laboured. That last trip roundtrip was about 90 mins on top of the other walking I did this morning. 17000 steps. My face is red due to getting hot and my fingers were swollen from the blood travelling to my extremities. Luckily, lunch was good once I got home and I feel Ok now that I am cooled off though my face is still lobster red.
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50'sgirl- I hope Havalen (sp?) is kind to you. I need to read up on that one.
Sondra and moth- the meditation is at the beginning and end of the session. We start with lying on our backs and going head to toes relaxing the body and concentrating on breathing. Then we either sit on the floor in the crossed leg position (I cannot do) or sit in a chair. We continue the session with the various poses and stretches. Then at the end we go back to our backs and repeat the relaxing exercise and say Namastay (sp?) and that is it. About a 45 minute session. I am just not good with the breathing and concentrating on the head, eyes, eyebrows, etc etc. I want to rush thru it.
mae- It is warm here too. I do not like it.
mara- Wow. Rest.
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Candy, woke up after a small nap after my post. Feels better, fan is on as well. It was warmer here as well so was not prepared for the heat, significantly warmer than this morning, I might as well get used to it since I will walk in the summer at times too. Not going to try that sort of walk again. Juat will go to and from the hospital, take a rest and see how I feel after. Those amount of steps would be fine in several walks but the 11000 steps with virtually no rest in between was too much. Would have eaten at the burger place but there is no dine in due to stay at home orders. 17000 may be a new goal I decide to shoot for but separating them and doing a lot in the morning when it is warm I think. Good for you on the yoga,
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Mara, 17000 steps, WOW! That is a lot of walking in one day, especially in the heat. Take it easy for the rest of the day
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Lynne,
Thank you for your post. It really made me relax about the whole liver mets dx. Mel, you too. I am very grateful for the encouraging ways of those on this thread. I would be a basket case without your guidance.
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So, I made a quick trip to the grocery store and just before leaving store employees locked it down. Cops had guns drawn on a suspect in the parking lot. I moved away from the crowd looking out the glass doors and waited about 10 minutes until police had the guy in custody. No idea what got him pulled over but I was happy to not be a part of that mess. now, I'm going to try to relax again, lol
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Yikes, Illimae! I'm glad you're OK. How scary!
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Booboo, isn't that bit of encouragement like water for parched lips? Hope, both precious and terrible. I come here because the fact that others have walked similar paths is comforting in its way.
Just had my phone meeting with the surgical gyno. It went like this:
Me: TAKE IT OUT TAKE IT ALL OUT TAKE IT OUT RIGHT THIS SECOND NO BIOPSIES JUST YANK IT WE KNOW IT'S CANCER WHAT ARE WE WASTING TIME ON!?!?!
Her: Hold your horses. I can't just yank out your uterus.
Me: Oh yes you can! I know you have the tools. Just get it done!
Her: I want to do a hysterscopy and D&C and see what we're dealing with and if you have a low grade cancer then the hysterectomy can be performed here. If you have a stage 2 or higher, you will need to see a specialist in Vancouver for your surgery.
Vancouver is 6 hours away. It's a hell of a drive.
Doc said that 'standard of care' is that they have to know what they're dealing with and while she understands my anxiety, it really is my best interest to have everyone know what's going on and a hysteroscopy and D&C will tell them. Results will be rushed and take about 2 weeks. That's a rush.
So with my heart in my shoes I consented to the hysterscopy and D&C. The only good thing is that I will be out for the hysterscopy, which are known to be unpleasant.
I don't know how to feel.
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Ok, I am frustrated.
I got a call from my texting friend I have mentioned here before. He is the one that goes and eats in restaurants, goes to stores, church, etc, irregardless of Covid cases. He told me he got the Moderna vaccine today-- shot #1. Then he said "well I guess I can stop wearing masks after the 2nd shot". I said NO, that a person should still mask and social distance because of the variants and that the vaccine is not 100%. He said "Candy, I have to live my life. I know you have cancer and need to be careful, but I don't have cancer". I explained that it is frustrating that people think of themselves and not others. That if people do not do the right thing, it can affect the innocent. There was a case of a bar in Illinois that had a party and they traced, I think, 146 cases of Covid back to that party. That a nursing home resident got infected. That nursing home person was not at the bar, but someone brought it to the nursing home. And that we still need to be careful, even if we have had the vaccine. That the vaccine doesn't mean Covid is over.
I get so frustrated at people nowadays.
I also told him that I did a yoga class today. He said "Oh the twisting around on the floor". I said "No, this is chair yoga and gentler". He paused. I guess he thinks I am a weakling anymore. Not working. Doing chair exercises. Like I am an invalid. Less-than because I cannot go out and about like I used to. He just doesn't get it.
Maybe it is better to be alone. Sometimes I feel worse after I talk to people.
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runor- I would hate to have to wait the 2 weeks, but sounds like that is best. You do not want to get into a surgery they are not equipped to do. Do the hysteroscopy and D&C and biopsy and see what you are dealing with. In your pocket.
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runor and Candy, GRRRRR! runor - I'm glad they're doing "something" but I'm sorry they just don't get it. I hope that the "something" leads to a complete hysterectomy for you!
Candy, some people will never get it. It's not just people with cancer who need protecting, but it's everyone else out there, too. You're a wimp for doing chair yoga! Does he have any idea how bone mets HURT??? I've started using a cane when I'm out and about. More as a "warning" to people that I may not be completely steady on my feet and to give me a little room to pass on the sidewalk.
I'm glad this living room is here for us.
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Runor, it’s time to scream - long and loud screams. I don’t know what to say. I wish I could move time forward so you could put this all behind you and deal with whatever it is. There are so many issues. First of all, a 6 hour drive if the procedure can’t be done near you? Holy cow! Hopefully, you won’t need that, but still. Next, a two hour wait for results of biopsy? How long would that take if it wasn’t a rush? Six months??? Of course, the worst thing is that they can’t just do the hysterectomy. I mean, I understand it knowing that it can only be done locally under certain circumstances, but still. I am so sorry that things are so complicated, slow, and impossible to take. I can only imagine how frustrated, frightened, and impatient you are feeling.All I can do is remind you that people here understand, care about you, and will be here to support you and listen.
Hugs and prayers from, Lynne
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Candy, I am with you...people annoy me! Well, most people. I got my second Covid shot a month ago but I still mask up and am really careful. People can be carriers without even knowing it. California is discussing opening fully June 15th. How? They lowered the requirements, as if that is supposed to make things safer. What?! My granddaughter, who lives with me, returns to in-class school next week. I am both happy since she is social and needs it, and frankly I am exhausted doing her schooling with her, and scared because she brings every bug home to the rest of the family.
Runor, I agree with Candy although I sympathize with wanting to just get it over with. I am praying for you.
One thing about surviving MBC for five years is that my family has no clue that I am still tired, stressed, and still not capable of doing all the heavy chores I used to do. And I am tired of being this way, but it wears on them too...Just my thought for the day.
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Won't your friend be sad when he gets covid again. Although the vaccine will likely protect him against the ICU and death, he will be out there possibly infecting other people and he can still get sick himself. You are right, he is being selfish.
IntoLight, I hear you about getting so very exhausted. I am on a targeted therapy which should make doing things easier but it really does not. I struggle to get started in the day and keep up with the few things I need to do daily. I could easily sleep all day. I am going to try going to bed much earlier than usual and starting the activity in the morning.
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Runor, I am still thinking of you and hoping the two weeks go quickly to get you answers that you really need. I am also in your pocket as well.
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oh runor, how frustrating but it does sound like a good plan. The expert surgical oncologists are in the Lower Mainland & if that's who you need, that's who you want, kwim? As I understand it, there are several different surgical techniques and you want the one that is most suitable. Well, and first you want a firm diagnosis. It's really same for breast dx - takes a few weeks to get from biopsy to results to surgical plan. You can do it. Just let it all unfold as it needs to. (btw, if you need to book in the LM, check the surgical waitlist site first & get a referral to someone without a full slate. My GP's first choice for my breast surgery had quite a caseload & she said "she's good but not so good that it's worth waiting that long". I went to an oncology surgeon who did my surgery a week after dx.)
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Thank you friends. I am glad I have you all.
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I’m confused about the timing runor but it’s good that you are getting action.
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Runor~You’re on my mind. Power to us sisters. We hold each other up when one stumbles. I am hoping it’s just an endometrial issue and thickening. You still could use getting those lady parts out. They. Cause nothing but problems anyway. Still in all of this you still manage somehow. To magnificently put it in to words.
I’ve always said I feel like that one Balloon that didn’t get enough helium and lags behind all the others bobbling and shining bright and tall. I’m the one that drops first in the bunch, the one with the odd string. I sat and thought today we all are here together, as together as we can get. But we still come back here. Together. It’s not in person but it helps me. A lot. I feel as if I know you all and your life patterns and hobbies. That’s a special thing. I had my oncologist tell me at initial diagnosis, that he thought I had two years. I’m glad he wasn’t right and here I am . Still pushing along. Five years seems not long to me. But when everyone of those days are spending battling. It gets so tiresome.
BooBoo💜. Good to see Into light. All you other ladies. Sleep tight I woke up to potty and now we’ll see if I can sleep again.
Candy~ you’re so sweet. Hugs my friend.
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So, my creatinine levels have doubled, my oncologist is hoping it's just a kidney infection so I've had more bloods and a urine test and have to go back in 3 hrs for an iv infusion of fluids to try to avoid being admitted to hospital again. Who'd have thought I wanted to have a kidney infection. I've got an anxious 3hrs ahead of me. I hope you get back to sleep Mel.
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Ah, this blessed living room of Mel's, where she bobbles like a half filled balloon and loved by all of us.
Molliefish - I will, sometime between April 12 and April 16, this coming week (date not final yet but that's the time frame) have the D&C and hysteroscopy done. After that it will be a two week wait for results. I waited longer for my breast cancer biopsy, almost a month. The waiting is killer!
Pots - a friend asked if I might be having surgery at Women's Hospital at the Coast. I really don't know where or who or if I even have any choice in the matter. At this point I don't know that I'll need to see a specialist, but I'm thinking it seems likely.50's Girl - Canadian medicine moves at a different pace. Good day, eh! My friend just took her mother for shoulder replacement surgery that she has been waiting for for FIVE YEARS! A 5 year wait for surgery. She was 75 when she was told she needed it and 80 when she got it. It's insane.
Candy - armchair yoga is where you lift the armchair over your head while you greet the sun. Then you balance the armchair in one hand while bending your knee and striking a pose. Then on your back, toss the armchair on your feet like riding a bike upside down and juggling. Armchair yoga is NOT for wimps. Your friend doesn't know you could probably take him in an arm wrestle with all that furniture lifting you do! What's that famous quote by someone I can't remember, " hell is other people."
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Candy we call those people who say stupid thoughtless things ‘ Eejits’!
I’m in today to start bisphosphonates. Was meant to be Zometa, but when I raised my concern about only having one good vein which is already constantly poked for bloods, my NP said at clinic yesterday they might do denosumab instead but would need to speak with my MO. So we’ll see what I end up with.
Have had such a rough ride with Capecitabine SEs, was worried they might take me off it before we even know if it’s working. However my NP was great - highly experienced and no messing - she said “this shouldn’t be as bad for you, so we’ll need to do something about the toxicity. Don’t worry, we’ll get it sorted out!”
Felt much better as she really spent time listening to my woes....I was last patient of the day and she was running well over an hour late, but I always make a point of saying to her and my MO that I would rather they spent time with patients who need it than keep to time and that of course includes myself on the odd occasion when I need to discuss stuff!
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Kittykat- It is several hours after your last post. Check in when you can. Hope you are doing ok.
runor- You are so funny !!! Your version of armchair yoga- hahaha.
Karen- Eejits. I have to remember that one.
Another day here---8am. Cooler than yesterday. 50's today versus 80 yesterday. Windows open to the morning air. Not much today. Hope all are ok here. Mel hope you got some sleep.
Dutchiris should have had surgery yesterday. Maybe she will check in.
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Candy, I got to go home, thank goodness, we redid the bloods and they were better, I've got a course of antibiotics, Sanju thinks it is a kidney infection, results back tomorrow and she also did a chest xray to make sure the pneumonitis is totally gone. She will call me as soon as she gets the results.
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Thank goodness Kittykat. Rest well--- this is your bedtime, right?
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Runor, Kitty Kat and Dutchiris (thanks Candy for helping me keep up), I am in your pockets. So I am understanding runor will have about a month between doing the procedures and getting results from that.
Karen, there are many eejits around, my grandfather used to call people that. He was also from Scotland.
I got a decent night of sleep, walking today again, I was not sore from yesterday but am just doing half an hour at a time and coming home. That will not kill me like doing 11000 steps all at the same time with no rest. I will also walk shorter walks outside when it gets warm. Taking advantage of the sun since we are to get rain for the next few days through the weekend. I don't mind walking in the rain either. The step number is fine, just need fewer steps at once. Not doing much else, just watching videos for money and have the christmas music that also pays to listen and charge the device for a few extra dollars a month as well. I don't like the other stations so play it quietly in the background
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Thanks Candy. Soon, its 9pm here.
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Saw this on Facebook this morning. I am a cat person and I figure this is what I mean by my Yoga sessions. Or so my friend thinks.
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