My Husband, My Life, My Love, My Family, My Cancer
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Are you willing to consider a dose reduction?
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Hi All. Just found this forum and I will lurk awhile. I have no one else to complain to so it is good to see the honesty here. My DH, DD and her DD live with me so I try hard to smile and stay positive, but it sometimes just hurts. Thanks.
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Shetland~I would consider a reduction for sure. It's my Japanese oncologist that has kept me nead for almost five years that insists I stay my course. I will discuss it with him on my next visit. Thank you for the suggestion.
Intolight~Welcome to my second home. I come to laugh cry yell support share and allow myself this place to be to just let it all out. I hope to see you here in our living room allowing us to provide the tea and snacks. We can be your sounding board. It works for most of us here. We're like a family and we care. So here is a welcome hug. Sometimes having a house full makes it worse. You have to plaster on a fake smile. I know I do . Insomnia finds me also. Stressful anxiety.
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Mel, your words are realistic and I hear your anguish.
I tried to express to my Palliative Care psychologist those same feelings. Unless you are Stage IV and on these hard treatments, not sure folks really understand the daily death threat sitting on your shoulder. It was suggested that when the dark thoughts start, to visualuze a big STOP sign and concentrate until this mental pain eases. It works only to distract me.
What are others doing for coping skills?
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Sandi, walking is my main coping skill. I am a worrier by trade, even before cancer. Cancer for me is not the big worry which is weird. I still worry about everything else. If I take a walk, I feel so much better. Sleeping with my rain noise which includes subliminal messages along with a fan noise at the same time keeps nighttime thoughts at bay, though does not stop dreams all the time.
If I do nothing physical, treadmill, outdoor walk or mini elliptical, I am depressive the rest of the day worried about stupid shit like having an early MRI and port access appt on Friday. Or when my brain tells me, I'm tired, I'm tired over and over again. I have to lip sync the words of the song quietly to get that out of my head while walking.
On another front, there is quite a bit of snow out there so thinking of trying out walking short distances to get acclimated to it. I may try different boots I have too. We will see.
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Mel,
I am sorry you are having such a bad week. Maybe what you are looking for is closer than you think. Have you ever explored your spiritual side? We all have one. I think God is trying to get your attention. If you would like to hear my story, give me a call or PM. Hang in there. Better days are ahead my friend.
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Thank you BooBoo~ that is one area I struggle with.
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Mel- You are in my thoughts and prayers. Your post was so real.
IntoLight- I have met you on other threads. Welcome here. We call this "Mel's Living Room". A place to plop down on the couch, grab a pillow, maybe a glass of wine (if you are so inclined, I would have hot cocoa), and rant, cry, or just talk. Boy, do I wish this Living Room were a real place to go. But, we truly "get it" here. And no judgement.
Sandi- My coping skills... I don't know. It is a struggle every day, sometimes every hour. I have found I am a person that needs schedule and purpose in my life. With Covid and cancer, that is hard to find. Even with being cooped up in my house all the time, I try to have a schedule to my days. Up each day at same time, to bed at same time. Bill paying, laundry, cleaning house. A schedule. Yes, the "daily death threat sitting on your shoulder". Will this be the last..... Holidays, Fall, etc. Counting down the days to my next scan, 21. I cannot even escape the thoughts at night. The dreams about my old life, old job, etc. Sometimes I wake up and just cry. I pray a lot-- just go around the house (I live alone) and talk with God. Like He is there in my house with me and I just say over and over "Help Me". I do look around at my surroundings and then thank God for all that I have. Thankfulness. Just trying to continue to be thankful.
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Hello everyone, I just want to say everything sucks.
I'm just flopping myself down on the couch to whine, whine, & whine some more.
I'm hating Abraxane right now. I had days of pain & fatigue. And now I have a numb lip! I didn't even know peripheral neuropathy could affect the lip but yup. It's a thing. The neuropathy in my fingers is a bit worse than before as well, even though I iced for the whole infusion.Also I had night sweats two nights in a row and last time I had that was way back in spring when I was super sick but already on treatment. I can talk myself into thinking that maybe this is a sign of tumor die off or some abraxane or immunotherapy reaction. But I can also easily talk myself into thinking this is a sign of progression & this treatment is failing.
No word on lung met radiation scheduling yet. I heard it can take a couple weeks to set up. WTF? I have a frigging tumor that grew in 8 weeks. If I delay 2 weeks between mapping & start the thing could be outside the target field already
I'm seeing my massage therapist today. I had cancelled a bunch of appointments when our covid numbers started climbing because I felt these weren't a necessity. Now I'm back to thinking these are essential for me.
Oh & hey, my school likes to rub salt in my wounds - I made the honor roll (again, ha!) & they mailed me the certificate. It's for the 2019-2020 school year. Great. Thanks for reminding me how my dreams are all shattered.
Does crying count as a coping skill.0 -
Oh Moth. I am so sorry. Yes, I think crying counts as a coping skill.
I was just logging on to voice my own gripes. And then I read Moth's post. Then I think I could have it worse.
Today is sunny and cold (high in the 30's). Feels like winter. Quiet here, as always. My phone friends are at work on a Tuesday. Not much to do. Then I got to thinking about my scans and MO appt on the 21st. We will then see if the 4 liver mets have grown. If it will be called progression this time. My heart starts to race and stomach twirls. So I quickly think about something else. Then the mind goes to the thought of maybe the next treatment line will be worse (like Moth's experience). Heart race, stomach twirls. Gotta think about something else again.
So I come here to see how you all are doing.
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Moth, I think yes, crying is a coping skill. It releases our pent up sadness and frustration and allows us to continue until the next need to cry! I’m sorry for your night sweats and pain and fatigue, and for your need to stop school for a while. I think you’re in nursing school? All of these things have piled up for you and that really sucks rocks. Enjoy your massage time, hopefully it will bring you peace and refreshment.
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I am thinking about all who are struggling right now. I struggle with thoughts but they come and go. I want you to know I’m thinking of you and sending a virtual hug to anyone who needs it.
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Moth, I think we all agree that crying is a legitimate coping skill. I can’t tell you how many times I have used it. What you are going through is overwhelming. I wouldn’t know how to deal with so much at once. Here you are, voicing your concerns and issues. That is a good first step. I do want to say one thing before I forget. If I remember correctly, you were taking Tylenol and ibuprofen for pain. Are you still taking that? I ask because of the numbness you are experiencing in your lip. I am allergic to ibuprofen. Eventually it caused a lot of numbness and swelling in my face, lips and tongue , but before that reaction I had noticed numbness in my lips after taking ibuprofenI had never had a reaction to ibuprofen before, so apparently the allergy can develop out of the blue. I am mentioning this just in case your numbness is from that too. You said that you are experiencing neuropathy. Do you think your MO would consider a reduced dose of Abraxane? It might help. I choose to believe that the night sweats are from tumor flare or die-off. I had that with one of my past treatments. I do hope that you have a wonderful massage, but a good cry and whining session can help, too. When do you see your MO next? I think it is important for you to let her know everything that is going on so she can assess it and determine how to improve things.
Hugs and prayers from, Lynne
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Moth, crying is most definitely a coping skill. When it is not non stop crying 24/7, a good cry does release some of our pent up stress and emotion. I cry a lot when super fatigued. You definitely have too many things happening in your body and need a break and getting that certificate was an extra punch in the gut you did not need. I am so sorry this all is happening at once to you. I wish I could help you more but a great big virtual hug is coming to you.
I have not yet gone out in the snow but debating getting lunch and cleaned up and walking to the nearest grocery store before even more snow descends on us. I don't really want to rehearse tomorrow before my infusion. I plan to walk since I also have a doctor's appt this time. Yay, I get weighed. I know I will have gained weight due to all the peanut butter this time. No amount of walking I do can burn that many calories off. What I have done between sittings is getting my phone, playing a song from youtube and marching on my stepbench that I keep between living room and kitchen. Easier way than much else I feel like. I looked at the treadmill and really did not want to do it so this was my compromise. One song then done. I still like the stepbench because I have not tripped over the slight rise in floor since and since I always use the right leg to step up, it is much stronger than before.
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Candy, We must have posted at almost the same time, I missed your post a little while ago. I'm sorry the stress of your next scan is getting to you. Worrying is natural, especially when we in the cancer world never know what's ahead for us. And just from me, don't think your worry doesn't matter because you don't have it as bad as someone else. These times are very isolating and when there's no one to take your mind off things it's even harder to break the anxiety. If only Mel's living room was a real place for us all to hang out in real life. I'll be thinking of you and in your pocket for your upcoming scan on the 21st. 🌺
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Sorry to see many of you struggling.
Abraxane was tough on me too and I had to have to dose reduced but it was tough on the cancer too, so I’m hoping it’s worth it for you.
We’re back in Houston to do more, hopefully final packing and cleaning in the house and my quarterly scans and appointments over the next two weeks. In the meantime, no issues, just slow improvement on the vocal cords still.
On the bright side, I had a gift from a good friend waiting on my doorstep when we arrived last night.
cheers!
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that looks awesome Mae. I hope you enjoy the gift. It looks like some fun to try different types of wine. My DH last year got the Johnny walker sampler. I did try some I have to admit. Surrounded by chocolate. Delicious!! Enjoy!
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That is awesome Mae. Looks quite enjoyable.
I had a decent day today. Was more productive on surveys, laundry and walking. I did not go out for milk. I will have to walk to the hospital tomorrow, but I have boots that will work just fine. By tomorrow there should be more plowed anyway. I will also take a pair of cleats if I feel it is slippery. I did walk to different songs on the spot on my stepbench. It is quieter and probably gave at least 30 to 40 mins throughout the day. I also tweaked my peanut butter usage to actually using a tablespoon measure instead of huge spoonfuls. Trying to simply shrink portions versus completely cutting off things I like to eat.
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Mae, I like your friend.
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lol sandi
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Yep I feel so bad for so many of you. I think a pity party is in order. really. Thank you all for your response re: dd. We have good days and not so good. Today was good so far, but as you know that can change moment to moment. We discuss coping skills frequently. For me it's the walk outside. Sometimes quilting does it other times I'm too stressed to focus on it. And my stress is relieved greatly by talking about it to somebody that gets it. Thank you all for being here. So sorry as well.
Gailmary
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So, lots of us are struggling... me too I’m afraid 😟. On Faslodex only and Pleural effusion getting worse ( apparently it should improve with time, or need drained... been there before). Pain and discomfort is the thing and my nurse team are trying to help. Unfortunately can’t do anything which is ibuprofen/ naproxen based as on a blood thinner, codeine makes me nauseous and if all hell let loose I’m allergic to morphine ( had an actual epileptic fit when they jabbed me after a wee op years ago).
Had a wee cry today as the pain not great and always in the back of your mind is this the cancer running riot?
Anyhooo... was thinking about pain and how it can be controlled, even short term. I’ve had acupuncture before for a shoulder problem (calcific tendinitis- agony), so might look at that for the effusion - anyone else? Also will ask about medical marijuana ( not a hope.. this is Scotland) but would love to see the reaction!
Pain and all the stuff in our heads is much harder to deal with... we need to work through it the best way we can...
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Karenfizedbo- Sorry you are struggling. I cannot advise on pain management, but wanted you to know I care and hope you get relief soon. Gentle hugs from here.
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Karen, I had calcific tendinitis twice, once at 40 and once at 50. Worst thing ever. Luckily, cortisone took care of it both times for me. I know that struggle. I tried acupuncture for back pain after a car accident. Unfortunately, it didn’t help. I’m glad it helped for your tendinitis. It can’t hurt to try. Hugs.
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Venting here, today was the 1st day of me being moved from my regular retirement insurance to Medicare and retirement Medicare advantage plan. Early last month I called new ins. provider about pre-approvals to find that could not be submitted until 12/1, so I notified MO and Neuro MO to postpone appointments and resubmit on 12/1. Mid Nov, I messaged both and financial clearance dept. as a reminder with new ins. info. Last week I messaged all again with a photo (front & back) of my new ins. card. Today, I was told I was cleared for MRI tomorrow but I called new insurance and they knew nothing. MRI was canceled 5 minutes ago after I sent more messages that it was not approved. Ugh, I feel like I shouldn’t have to work this hard.
Anyway, rant over, time for wine.
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it’s always something for us to hoop jump through. Bad enough were sick. 😡
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Today was my friends funeral. With the covid and all I chose not to go. I didn’t want to take a chance. Crying with masks on doesn’t seem to easy to do. They had the service streaming on zoom. One by one I saw friends I went to school with. Aged, older and none of us can stop Father Time. I found out one of the groomsmen at our wedding is in the hospital with leukemia. It’s just all this sadness. It seems more obvious around the holidays.
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moth - sending a big cyberhug your way. Too many things weighing you down when you already don't feel good. Hopefully the caring you find here helps soothe the sadness. I hope you don't mind me saying, for some reason you remind me of when my daughter calls me, just needing a little "Mama love" see call it. She's a strong woman, but we all need a little unconditional TLC sometimes. I think we find that here.
Oh my, you ladies are are so strong, and you support each other so staunchly. The cancer scares me for when this first line of treatment fails, but I see your strength and will and perseverance and I am encouraged. To some that may seem cliche, but it is from the heart.
Mae, that is a good friend!
Mara and Candy, I like the way you talk about redirecting your thoughts when they head into the pits. Sometimes, I can just ask myself, What good will it do me to give in to this [despair]? Other times, it's harder to fight off.
Grannax - kick cancer's butt tomorrow!
Sending good thoughts and peace to everyone in Mel's living room.
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Mel - so sorry about your friend and not being able to be at the funeral. That is tough. I think you made the right decision. There was a little town in Georgia that turned into a COVID hot spot a while back (far more than the surround area) after a funeral - people naturally crying and hugging.
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We all know we're not going to live forever. Nobody is. I've watched mom and a neighbor lady loose all their siblings and friends as they got older. So depressing. I don't know how they do it. I can't imagine that kind of lonliness. The friendships that we form here, anywhere actually are very important. Until Covid, I hosted a quilting group of ladies in their late 70s and early 80s (I'm 64) cause I think the socializing is so important to their mental health. Damn Covid.
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