My Husband, My Life, My Love, My Family, My Cancer
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Good Morning Ladies. Another looooong day of wondering what to do. So yes candy I’m with your annoyance of Covid-19. I don’t want to get sick , but it would be nice to go have a frothy star bucks coffee with cream and sprinkles. And walk around a mall. Do light shopping and at least feel like we are in the the same world as November 2019. So weird how this has happened. I don’t think it’s ever going away.
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I've discovered this new chemo hurts
I'm sore all over. I reas usually 2-3 days are bad and then it improves. Hope so. 0 -
The only way I survive not seeing my people in person is going outside for walks. I also sit in my burger joint because it is most definitely not crowded. I cannot stay in constantly, nor do I have a car to even pickup groceries. I will not put that on my older DB either. I am able to visit with them because if we live alone here, I can join another bubble. I was very happy to hear on the news that a bunch of covidiots who wanted to protest covid restrictions held a protest in one of our parks yesterday. They are being fined 900. People really have to be plain stupid to believe that this is made up by media.
All I am doing is walking today. It is cold but sunny so must take advantage of that.
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Oh Mel. I so agree. I do not drink coffee. But the idea sounds so nice. Maybe a hot chocolate with marshmallows, and walking around that mall. With a friend. Just strolling and enjoying the Holiday decorations. Alas, I am going to finish reading a book in my quiet house by myself. Then order another book online from our local library, with curbside pickup. So over Covid. So over isolating.
moth- Gentle hugs from here, my friend.
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Sondra, I live in East Dunbartonshire, so we’re tier 4 in the Scottish system - pretty much lockdown apart from schools...too many eejits not doing what they’re told. After Dec 11th they’ll review again but not holding out much hope of a shift. Our issue is probably much like your’s in that there are too many people living in too small an area. Holding out for the vaccine....I see there are moves afoot to bump folk in our situation up a little and vaccinate us before the healthy over 65’s. We’ll see if that happens! The Glasgow area is all a bit glitz and bling at the best of times so folk have already started putting up their Xmas stuff with extra bling just to cheer themselves up...oh and the local places have all sold out of spring flowering bulbs. Lockdown with nothing to do and wanting something to look forward to I guess!
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Moth~Oh no!!! That’s no good. I’m so sorry! Keep an eye on it.
Cansy~Hot coco works for me too!0 -
Karen - I saw the tier bump for the CEV on the news. FT is reporting Pfizer-BioNTech will be certified by the 7th and then its hours from approval to shipping it in from Belgium. Still think folks in our situation wont see even a hint of it before mid-Jan, but that is ok. Although I don't know why they can't vaccinate simultaneously with the mRNA vaccines for those who cant take a live virus/can go to a central point of distribution with facilities (like a hospital) and those in care homes and who can take a live virus get Oxford (2 dose -that hinky 1.5 dosage trial data needs to be trashed and I think they are doing that anyway). What are the chances this WONT be mayhem?
Moth - take care and I hope you get past that awfulness soon.
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Moth, thinking of you and hoping the nasty effects don’t last too long. Maybe you can think that your soreness is because the cancer is being attacked? 😳 Hang in there. 🌺
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Moth,
I must have missed it, but what are you currently taking?
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Hi BooBoo, I’ve been wondering how you’re feeling
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Hi Mel,
I started on the Methodone, and I'm pretty sure I just need to adjust to it because it makes me dizzy....but it wears off. Overall I have to say my pain levels are down. I only take the 5 mg. of Oxy as needed now, and I didn't need my daily dose yesterday, so that's good.
It was kind of funny...when I went to pick up the Methodone at CVS, the pharmacist came over and was asking me questions. I finally told him that I was not taking the Methodone because of drug use, but for cancer. He got all “I'm so sorry" on me, so it was kind of funny. I probably look like an addict these days, so can't blame the poor guy!Anyway, thanks for asking. Hope you are hanging in there.
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booboo, I'm glad the methadone seems to be having a positive effect! I hope the dizziness goes away once your body adjusts.
I'm on full dose abraxane q3w since last Thurs. Before I was on taxol, had dose reduction and had smaller doses weekly rather than 1 big one.
Last night, in the middle of the night i woke with pain such that i finally broke down and took 1 mg hydromorphone. It let me sleep for 5 hr. I hope today is better
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Booboo, I am glad to hear methadone is helping with the pain. That makes life look better when you don't have pain filled lenses. Happy for you.
Moth, sorry about your pain in the middle of the night, I do hope today is going better.
I have walked today, weather is slightly warmer and I went to my burger joint to order beef patties. I like the way they are seasoned but order without buns. Want to grind up with some black beans and chicken burgers to make another type of meal and taste. The walk was nice and it felt good not to think I was tired.
I also chopped up some pieces of my laundry soap with a knife and then put them in my existing handy chopper with some laundry powder so it would not stick. I use them for laundry as well but putting them in hot water cause small pieces of soap to float out. By including them in my powder mix, they will dissolve better as I make up the liquid brew. I bought another handy chopper for my food stuff because although I can rinse the chopper, not want to have laundry grade stuff and food going in the same one. New one comes tomorrow. Still llove my laundry and surveys as well.
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Moth,
It is so odd how I had fewer side effects with both Abraxane and Taxol than I did with many of the other chemo drugs. I’m convinced that I’m an alien. I remember Mel saying she had to stop Abraxane because it was too hard to tolerate. I may end up taking it again if I decide losing my hair yet again is worth it. Right now, I’m not heading in that direction. Anyway, so sorry you are also having issues. Time to call your MO. There’s no way you should have to feel pain. Take care my dear.
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Laurie, that is good you had fewer side effects with abraxane and taxol. I only had one cycle of taxol after my first drugs which were supposed to be the harder ones. I found the first two drugs easy thanks to steroids needed I think. Only was down 2 days when weaned off steroids I took for the day before, day of and day after. In that 3 week cycle, was able to eat, exercise etc. When it came to taxol, which my MO said she would give a 90 year old, my body had other plans. It knocked me practically into a coma. It was no good as I was still working. My MO dropped it and just kept me on the Herceptin at that time. They tried another drug combo Taxotere, Herceptin and Perjeta when that drug was introduced to Canada. I had one infusion of that and same reaction, I said I would rather have no drugs than be in a coma as that was not living. My MO agreed and told the Tumour board that I had a severe reaction to the drug so I could keep taking the Herceptin Perjeta combo. Ontario is particular over how drugs are supposed to be taken which is why the chemo was reintroduced. Now I just get Herceptin due to Perjeta side effects.
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Mara,
Good for you. You tell them what you will and will not tolerate. You have every right to expect a decent QOL, and some of these drugs make that impossible!
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That is for sure. I am stubborn but know how my body reacts to particular things. The most debilitating SE I have now really is mostly fatigue and transient nausea the first couple of days post Herceptin. I can treat the worst of the fatigue with a walk and eating usually helps the nausea but if it is too much, I do have Zofran or ondansetron as its generic name. Drippy nose is a PIA as well, but it does not continue the whole time. Certainly not the same kind of side effects you all put up with most of the time. Found a good quote that applies to me when I am critical of not having done enough in a day...
I also like this for those us who are tired...
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I enjoyed that Mara. Thank you.
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You are welcome Mel, I sometimes think a bit of levity can bring us up when we feel the worst and sometimes quotes can say what we need to read or hear.
I have to laugh. I made a comment on a story on the CNN facebook page. The reason I have to laugh is that it said Bette Midler liked my comment. I got so excited I was about to spout it all over, then I decided to research it. It was just a fan page, not the real diva who closed her Facebook back in 2019. Glad I did my research, but boy did I enjoy that brief excitement in thinking a celeb would like something I had to say.
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Mara,
That is so funny. And I LOVE Bette Midler. I think she is so awesome. I just learned a valuable lesson, so thank you! I would have had it in the evening news, only to find out the truth!
Also, I like the “Let Yourself Rest” so much. Thanks for sharing it.
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Hi everyone. I've been mostly a casual lurker here and recognize many of you. Mara. Thanks for the permission to rest. I need to remind myself that is a self care skill. Life has been hectic as hell lately and insomnia rules.
I've been on faslodex for a few years now and I'm due for scans on New Years Eve. I'm feeling fine. My only worry is that this stress is harmful. My stress is in regards to my Dear Daughter.
Her dh of 16 yrs died a few weeks ago. Cihrosis of the liver/ covid. I wanted her to dump him the whole 16 years. Just a bad influence. She is both ADHD and autistic. She is handling his death well except she can't bare to be alone. She spends all her time at girlfriends. He kept me out of their mobile home but I had key and went in first time in 4 years. It was totally unlivable. No wonder her anxiety the last few years was so bad. And that she's not there. My dh and I began removing all the trash and she helps just a little daily. But wow what a job. Her diagnosis makes it literally impossible to manage it on her own, so I wasn't surprised. But wow!. And as you can imagine an emotional time for her. So I'm constantly walking on eggshells so I don't set her off and she can't move any faster and to top it off her friend is very emotionally immature. What a chore she is!
At this Thanksgiving season, I am thankful he is gone, that I haven't lost her and that faslodex is so easy. No reason for me to be bored but if I'm not cleaning I'm just tired and can't focus on much else. Maybe there's some depression here. I review my blessings daily. It helps lots. A warm autumn in wisconsin where I enjoy my country life lots. Thanks for listening.
Gailmary
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Gailmary,
So glad you stopped into Mel’s living room. That’s what we call it. Sit awhile, relax, and enjoy the warmth and love of other women who care. I am so sorry that you have such a burden to carry. This disease is enough, but to have that kind of stress on top is no good. I will pray that God lightens your load and that your daughter would come to understand that you love her and want only the best for her.
Take care.
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I am sorry to hear about your dd and all her challenges on top of your BC. Of course there will be some exhaustion from all the work with her and your situation. I hope you have someone you can talk to like a social worker or something or a dear friend you trust. You need an outlet, which we can help with for sure but someone to talk to diirectly on zoom or something like that would be helpful for sure. I hope you and DH can sometimes get out for walks outdoors if the weather is holding. That can certainly help to put some of the stress to the back of the mind. You can only do what you can. DD has to also be accepting of help as well. I feel for you in this situation. Please keep coming but make sure you are talking to someone, or friends, or us, besides dh. Too much is going on.
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I woke up feeling depressive, but was not suprising. I did not sleep well and that is always the case so I just have to keep thoughts neutral. Not sure what caused the insomnia other than going to bed later than 10. The only exercise I may do is go to the grocery store before we get all the snow we are supposed to have. Yuck.
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Gailmary, welcome and I’m sorry, the situation with DD sound tough for sure. Hang in there.
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Moth what chemo are you taking? We could check the site for you and see if there are any tips. Is MM available in your area? I find that to be good for body aches and nausea. Hugs and support coming your way.
Booboo I’m glad the methadon is working. I’m from NY and I remember lines outside of the methadon clinics from the 70’s and recently a few years ago I saw them again. I guess heroins on the rise.
Candy I hope you get safely to some outdoor activity soon. I went for tea outside with a friend yesterday. I enjoyed sitting in open space but I don’t think we dista’ced enough while drinking the tea. I think it’s best to wait but I do go for rides and walks still challenging emotionally.
Mara I love your post and have done some of those things. Thanks for the sweet gentle reminders.
Gail Mary sorry about your daughter (2 teenaged grandsons with autism) and I know what you mean about the departed friend. I hope you get to a place of pain free energy for yourself. I’ve cleaned behind my grown children nieces and friends definitely mental health issues. Autism Anxiety and depression sometimes needs scrubbing.
Tanya
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Gail Mary, welcome to my second home. I know life has such challenges with kids. I’m having some of my own with my son and even things going on with my DD. It never seems to end or smooth out. It’s enough to drive you crazy. Enough to handle our own lives. Difficult they are.
I’m so tired of worrying about someone doing what they should just be doing. I’m sick of playing clean up behind people and I know DH is as well. You can only be so nice for so long. People can’t just function normally. It’s like some You have to hold their hand. I’m sick of that..
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Tanya, I'm on abraxane + atezolizumab immunotherapy. Got them both on thursday. Friday eve to Sun afternoon sucked but things got better Sun evening, and so far today is manageable with Tylenol and ibuprofen. Every muscle and bone hurts and bad fatigue. Dh and I drove in 2 cars to the service shop as one was due for regular maintenance and we wanted to leave the car there. Now I have to lie down after that big outing lol
I'm looking into pot. Vancouver has dispensaries everywhere - it's sorting out the good ones that's hard. And of course covid means I don't want to go anywhere in person.
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Moth - the last time I was in Vancouver (2005 maybe), I pulled into a gas station close to 10pm to see if they had any beer available. I couldn't get booze but the guy asked if I was open to buying some weed instead from under the counter. Perhaps try that approach?
(only half joking!)Not sure if anyone saw the news earlier today, but a big AI program cracked the challenge of understanding (and predicting) how proteins fold, which would potentially save a lot (as in years) of lab time. Understanding protein folding helps to understand their biological input and what they do, such as how insulin manages blood sugar,etc. Let's hope that sort of advance can help all of us down the line.
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Hello Ladies~ long week already and it’s just barely Tuesday. Sometimes life just sucks out loud, you can’t make everyone happy, people and their moods. Everyone has their ways of doing things and others may not like the way people do their things. Somethings just crash together. I’m so sick of trying to have a peaceful existence for whatever time I have left. I need quiet and peaceful feelings and thoughts. Anxiety lives within me daily. Fear of the unknown lives in me daily, anger, lives within me daily, I feel like sometimes because we have cancer we should just suck up the way things are because we have no choice being so sick. Many battles went un fought because I just don’t have the energy to battle anymore. I’m tired and I just want people to live their lives and leave me alone. Just let me do what I want don’t bother me. I just want to be able to be my new normal, I’m realizing my new normal isn’t a very happy one. I’m never happy anymore. I never smile. Nothing to smile about. There is. Always something to figure out or someone messing something so very simple up for no reason. I do not know how people get along in life always needing their asses wiped. So sick of a lot of things. Myself included. I need to be better at doing things. I’m so damn tired all the time , even with the adderall. The 125 mgs is hard I will definitely admit. The day I was diagnosed was the day I stopped living. Ever since it’s been sadness and anxiety. Fear, anger, resentment. That’s what everyday is filled with. It used to be DH could bring me out. That’s even a challenge, he’s dragging down exhausted and tired as well. How long can people live this way?
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