My Husband, My Life, My Love, My Family, My Cancer
Comments
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Mara,
I often have a stuffed nose from what I guess are dust allergies. They get worse at night.
If you are a Vicks fan, you might try just inserting a tiny bit of Vicks just in the very opening of your nostrils -- I do that a lot at night -- and I find that it helps me to sleep and breathe a bit better.
Hope this helps if you try it.
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Hi everyone. Quick shoutout to Emac - glad you're checking in & feeling better. Oh man. Steroids, the drug I have a love/hate relationship with. But to get the pain under control, such a good move. I've been experiencing more pain lately - not sure if it's the cold weather or what - but when I've missed doese or been slow to take pain meds, I'm just flattened. I also get into a very illogical mindset of "ok, this is my life now, I just lie on the bed never moving and wrapped up with heating pads. Nothing will change." Then the pain meds kick in and I'm up and going for walks and feeling happy. But in the midst of it, I always hit this totally emotional wall of "oh well, that's it now."
SeeQ - that was a very bad and sad week.
It was my dd's birthday yesterday and we had takeout from a lovely Italian restaurant and then cake and we watched one of the Hallmarks. Then I crashed. I had done a bad job of handling pain yesterday so it had worn me down but I managed 2 walks, and I put on my new purple dress and even a necklace. Wig or makeup was a bridge too far though lol. I also forgot to actually take a picture lol. We're horrible that way - we have way less photos and videos of our kids growing up etc than other families do because we literally forget.
hugs everyone
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Moth, certainly sounds like a busy day for you yesterday, no wonder you were flattened but glad it was a good day. Good job on the walks through all of that.
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Moth,
I relate to what you wrote about lying on the bed and feeling that “oh well, that’s it now”. I applaud the fact that you get up and go for walks. Mara (and others) has taught us how valuable it is to exercise, and the mental benefits we get from it. My sister is a walker, and she and I had a conversation about me starting out slowly, but going for walks. So I’m going to do that with her while I’m here.
The one thing that may make it difficult is the weather forecasters are predicting a huge snowstorm this coming week in the Northeast. I’ll have to wait and see what happens.
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Booboo, does your sister have a hallway in the house or treadmill? Walking can be done in the house too. I have decided that if I can't get outdoors and want to move my arms some, I will walk up and down my hallway in the apartment. My place does not have enough length without having obstacles but outside hallway does. I just would wear a mask there. Kind of like mall walking in a way. You could probably do that too if the weather sucks. I am also known to walk on the spot or lift my legs in a chair as well. It all counts.
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So, a couple weeks ago I was asked by MDA to participate in a fatigue study. I let them know that fatigue hasn’t really been an issue for me but they still wanted me and I agreed. I started the med yesterday with is labeled as Methylcellulose (citrucel)/placebo. Citrucel I read is a laxative but I haven’t seen that effect yet, what I do see is the motivation to pack up boxes and take them to storage yesterday and cleaning today, like big cleaning. Not sure if it in my head or not but I am thinking DH needs some too! I don’t feel speedy, just motivated, weird.
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Hi All, just to report after a chat with my MO who asked me to ‘hold my nerve’ re the time it was taking for Faslodex to kick in and the pain I’ve had because of pleural effusion for 3 weeks and more now....I can report 2 full days with no pain meds! Still breathless and wonder if this is just the drug kicking it back and it will build up again before the next jabs. But still will take no pain any day! Cross posted to Faslodex thread sorry.. but I’m happy!
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Karen, I am so happy to hear this for you. That is awesome.
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That’s awesome, Karen. So happy for you.
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Karen,
Wonderful news. May it continue!
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Yay Karen
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Good news Karen.
Mae nice trial med that gives you motivation. I think you can do the commercial for it!
Booboo it’s nice to hear your self voice-talking about fighting for your life again.
Candy you have another week before your big appt. I didn’t forget and I’m hoping and praying that the weight loss and anything else is just coincidental and you’re fine.
Mara that’s nice that you have plans.
Moth my husband took pictures so now there’s not that many of him when the kids were young. I’m old so nowadays pictures are in phones anyway.
Waving hello to all BevJen Seeq runor rosie24 SondraF golden Emac KBL Minnie Meland everyone else that I can’t remember.
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Yay go happy Karen!
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Hi back, Tanya. Thank you.
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Waving at you Tanya my friend. It was nice to be at DB house for dinner. It was asian inspired, rice, chicken, sweet and sour sauce and some rice. Small dessert made from whipped cream, marscopone and oreos crumbled on top. Very good food and took home a doggy bag. Probably will turn it mexican and add to a couple of meals. We watched the cartoon version of the grinch who stole Christmas. I normally don't sing the song out loud, but I was doing that this time. Had fun. As far as Christmas goes, I am not going to be allowed to be alone for whatever holiday they do. They have to make more arrangement with SIL brothers and families because they are larger. I told my brother that I thought my gift for the family might be a gift card to the grocery store since costco is super crowded and lined up down the street due to limits of people in the store. I like that this is being done however, lets me know to do my shopping close to when the store opens.
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Hi Tanya~ sweet woman. My bedtime has come again and we shall see if I am able to sleep good or not. Some nights are peaceful, while others I’m up a lot to the bathroom. Does anyone else get soooo thirsty at night? I drink so much water. I’m like a camel. Never enough. Hope your DH is doing good today.
Hello KBL,Karen. Minnie,Sondra. Emac. Lee. Gailmary...Mara... candy. BooBoo... Chicagoan, Lynnwood,Goldens,dodgersgirl, Mae. Chelle....moomala. And ones I’ll remember and be back !
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Good morning everyone!
Some updates: I had my lumbar nerve ablation at the end of October - unfortunately it failed in pain relief (was told after that it only works about 2/3rds of the time). On top of that, I developed a nasty left sided sciatica which left me spending every afternoon w/heating pad. Spine doc started me on low dose naltrexone which has to be obtained through a compounding pharmacy. Naltrexone, at normal doses of 50mg or more is used in drug and alcohol addictions. But very low doses (from 1.5 to 5mg) have been found to help reduce inflammation. So I’ve been at 1.5 for 2 weeks and will bump up to 3mg this week. It can take several months to see results if it works, but I’m willing to try a different non-narcotic method, as Tylenol is like taking sugar pills. Can’t take Motrin (which really helps) as I only have one kidney that is somewhat compromised. I also just started a steroid boost for the sciatica and I’m like a new woman. Pain is virtually eliminated - I can actually get things done. Don’t know how long that will last but the temporary relief is a blessing. Also my MO dropped my Ibrance dose to 100mg due to complaints of fatigue. That too has made a tremendous difference. I have all my scans and a lumbar MRI at the end of the month. MRI will help determine what more can be done for my back.
In pocket duty for all - you name it, I can bring it!Have a peaceful week all
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Goldens, I'm sorry the ablation didn't work. I'm so glad you have some relief and hope the steroids work until the naltrexone kicks in.
When I had my car accident in 2013, I had sciatic pain down my right leg. Every time I would push the gas pedal in my car and drive 24 miles to work and then back home or sit too long (my job entailed sitting for hours at a time), I would drop to the floor in pure agony. Thankfully, after five months it settled down. I was ready to go out on short-term. It was horrid.
I hope you find long-term relief.
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Goldens, I am glad the pain is subsided for now until your drug kicks in, though it sucks that the ablation did not help with your pain. I am very sorry to hear that as well.
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Yay, Karen for less pain !!! Sorry, Goldens that the ablation didn't work, but hope you get continued relief with the meds. Pocket duty for your scans.
I did my Zoom gaming last night. We are starting a new game next Sunday and I have homework-- crash course in Star Trek. The game is based on that. I have never seen an episode. So I will be doing that this week. Maybe keep my mind off the scans. I am glad I found this gaming group. When/if Covid ever goes away, the group meets in person to game-- with snacks of course. I hope that day comes and I am still stable enough to join in. That is what I look forward to-- church in person, gaming, going to stores when I need something without being scared of getting infected. Simple things.
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Yes, I am waiting for the day things return to normal as well. I imagine it will take a long time and I don't know how vaccination will go since it is a hot button topic for people opposed to vaccines. Same sort of thing with people who refuse to wear masks in public spaces. Fingers crossed that I can get the vaccine in 2021, it will probably be around September next year according to my news here in Canada. We will see.
Enjoy researching the star trek, some of the different shows and star trek movies are quite good. That should be enjoyable.
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I have a question for those who are married. My husband and I have been having minor spats here and there because I feel there has become a double standard, where it's okay for him to tell me to be careful or not do something or make sure I do something or any number of things, but when I do the same to him, he gets a little irritated, like I'm trying to be his mother. When I bring up that he does the same thing to me, he says it's different because I'm sick. I may be sick, but I'm not going to break. I am by no means a submissive wife, and it irritates the hell out of me that he thinks he can do it to me but I can't to him. Lol. I know he's concerned for me, but this is getting on my nerves.
Also, I have to say if I'm cranky or in a bad mood, he gets the brunt and he knows it. When I'm around my daughter or grandson, they would never know. I am myself around my husband. I know it's not fair to him, but I am not going to be cranky with other people. Are any of you the same way? We've been married more than 36 years. I love him dearly, but I don't know how to get out of the round robin of him being concerned and then me getting mad because he gets mad when I get concerned about him.
I am very outspoken, so keeping my mouth shut is probably not an option. Ugh
Hi back, Mel.0 -
I’ll take pocket friends. Bone scan today and CT body tomorrow.
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Mae,
In your pocket for both. Hope all goes well.
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pocket friends arriving well stocked!!!! Mae !!
KBL~I have a similar issue with my DH, he does mainly everything around the house. One of my Mets is located at s3 and it’s a bugger. Limits the time I’m able to do things because of discomfort and pain. So he does help me a great deal. But if I want to do something , then please let me. I won’t melt. Another issue is sex. I have no hormones so I lack stamina or interest. He has hormones. So it’s difficult when one wants one thing and the others misses wanting something. I just don’t have it inside of me. It’s chemical because I love him more than anything. I have all the love and emotion for him just not the desires. Doc says it’s medicines as well like Effexor and hormonal medicine. Strip you of your desires I feel. Bad because he deserves better. Am I the only one who feels this way?
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Mae, in your pocket. I hope all is stable.
Mel, I don't have the drive either, but I have always felt that that's really the only thing he needs, so I have not said no too often. We have a rhythm now that we both can live with. It's been very painful at times because of atrophy. I have to say one thing. When I ended up in the emergency room, I was put on an antibiotic for a supposed bladder infection, which I don't think I had, as I definitely know when I have them. To try to stay away from a yeast infection from the antibiotics, I've stayed on a probiotic, florajen. I have no idea if this has helped me, but the last few times it's not been nearly as painful. I'm not sure if it's because I took time off to make sure I felt totally better or if it's that. I'm going to pretend it's that and continue taking it. I'm sorry about going through that part of it as well. I totally get it.
At least I'm not alone in the protective husband department. Not that I want you to be having to deal with that too. I really, for my own sanity, have got to get my brain in a position to just not respond when he says things. I need to switch to it being that he cares and is trying to protect me. It's soooo hard.
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Mae- Pocket duty. I will bring the peanut M&M's.
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Mae - I'll bring Hughie's shaking beef.
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Mae, pocket duty for you as well.
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it’s really a topic doctors do not address with patients. They really should. And yes it is painful. Especially with s3. I have dried up hormones and a chemical in balance with my hormones It’s actually a nightmare because I want to feel them again. I love my DH. He’s such a good man. I don’t want to take everything from him also. I just honestly never feel good.
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