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Scan time coming up...

Flufff's picture
Flufff
Posts: 68
Joined: Apr 2019

 

- and im trying to be cool about it. Having blood work done tomorrow, scan Monday. Result 12 days later. It’s a long wait. In Denmark, scan results as well as result on blood work will be in my patient portal after some days. It’s hard times ahead. 

 

Wondering if any habe tried getting a recurrence 3-4 months after treatment ended?

 

besides that, I’m okay. I’ve started in antidepressants and they seem

to work pretty well :) :)

oldbeauty
Posts: 317
Joined: May 2012

Hello Fluff, I hear you on the scan anxiety.  I've recurred 2X and now we are following a growing nodule in my left lower lung.  I have lost count of all the scans I've had over the years (15 years).  Lately,  I have tried very hard to adopt Donna Faye's attitude that scans are to be welcomed and not feared.  They are the means by which our physicians can best help us.  Sometimes you get NED; sometimes you don't.  But I have come around to accepting that the longer I go on, the more I truly have confidence that there are new treatments coming along, and longer experience with the ones we know about thereby permitting more directed care.  I re-read your "biography."  You've had your trials and still, here you are.  I hope you get good news from your scan. Enjoy your family while you wait, and the last of your summer weather.  Be safe.  Best wishes, Oldbeauty

 

P.S.  Your bio says "cannabis oil is a life-saver."  Do you mean pharmacy-grade CBD oil?  What complaint does it address for you?   We have medical marijuana in our state.  I have started to use a 10:1 solution (CBD:THC) to see if I can get off the Lyrica I use for my neuropathy pain.  I am just in the stage where I take .5ml once a day to make sure it's not too much THC, i.e., that I can function during the day.  My doctor wanted to try a 19:1 ratio but I can't find that anywhere.  So, if you care to respond what do you use; how much; for what?  Thanks for any feedback.

Flufff's picture
Flufff
Posts: 68
Joined: Apr 2019

Hi oldbeauty. 

When I went through my first treatment, I used THC at night and CBD during the day. I couldn’t do THC during the day, or I would sleep the day away. The THC made me sleep good and I only lost a few pounds while in chemo. In that context it was a life saver. The CBD helped with side effects. 

Now I use a 1:1 THC/CBD oil only for sleeping. I sleep soooo good.  Only had a few sleepless nights during the last two years. Even when I was the most scared. :)

And you are right with trials. I think I got everything possible. Obstructed bowl. Gastritis. Anxiety that required drugs (I had thighs of ending it all, not so good but luckily those thighs are almost gone now.❤️) All we can do, is continue to fight. 

Im trying to be a Donna Faye too, bless he heart ❤️❤️❤️

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2914
Joined: Mar 2013

Fluff, good to hear from you and I am glad you have something to help with the stress.  Sending you lots of good thoughts.

BluebirdOne's picture
BluebirdOne
Posts: 455
Joined: Jul 2018

Scan anxiety is such a real thing. Almost everyone I know has it, and why not?  Good luck to you! Hope the blood work is great. I am at the stage where they won't do a scan unless something serious presents itself. Just had my annual Medicare physical today, and a rheumatologist's appt.  Have had osteoarthritis for more than 20 years, and it decided this year to go out of it's mind. But in the end, I am still here, and trying to support all of our ladies. I am so happy that you came back to let us know what you are experiencing. I am here for you!

xxoo

Denise 

Molly110
Posts: 192
Joined: Oct 2019

Good luck, Fluff. I hope the time passes quickly until you get your scan results, and I hope they're good news. With the cancer and stage I had, many doctors in the U.S. don't do scans since reoccurence is usually in the vagina, but my doctor advises a yearly scan as a back up, just in case of recurrence elsewhere. I am six months away from my first scan, yet I still sometimes find myself anxious about it. 

 

I think you were smart to get something to help with your mental health -- depression is the last thing any of us need as we deal with this disease. 

 

Fingers crossed for happy news!

Flufff's picture
Flufff
Posts: 68
Joined: Apr 2019

For your comments. It’s true that I’ve been quiet. I really needed a break from cancer. I loat my job so I’ve got way too much time on my hand. So I’ve picked up reading again. Im struggling so much with stamina. Or lack of. I’m 3,5 months out of treatment. (Doxil and carboplatin) That was one hard trip. Way worse than taxol. Only upside was not loosing my hair again.

I need to pick up some new hobbies. Now comes fall and winter. During summer, it’s just easier to keep occupied not? What kind of hobbies do you have? 

Molly110
Posts: 192
Joined: Oct 2019

Hobbies are such individual things, but if you like to sew making a quilt can be amazing, and then when you're done you have something beautiful. I also love to do jigsaw puzzles and crossword puzzles. I like all kinds of craft things, but rarely actually do them. Now, though, there are lots of good videos online showing how to make/do all kinds of crafty things from stained glass to paper flowers -- often with kits available to make the project simpler. 

You will get your stamina back. I know you used to work out a lot, so a lack of energy/stamina must be especially hard for you. I'm almost 8 months out and thought I got my stamina back after 3 months or so, but just this morning when I bounced up out ofmy chair to do something I realized that I mustn't have been back to normal then because I have much more energy now. So, hang in there and be kind to yourself in the meantime.

 

Primavera's picture
Primavera
Posts: 227
Joined: Mar 2019

I go from one hobby to another like a maniac and while I get obsessed with one at a time, I keep doing the rest here and there. That way I don't have time to get bored or think too much.

Twelve years ago, I started with cooking. I read culinary school books while I tried chefs' recipes. It was like going to culinary school on the side. I do have a full time job. My boyfriend was happy.

Then I went into baking breads, baking cookies and cakes, decorating cakes with fondant, decorating cookies with royal icing, making gold-filled wrapped jewelry, paper cutting (banners/bunting, party decor). I think once I get to a comfortable level, the luster of learning a new thing wears off, so I have go into the next one.

Last year, during uterine cancer, I went back to crochetting and knitting.

This year, I'm learning calligraphy and embroidery. And I'm reading more. Believe it or not, through all this, all I really wanted to learn was sewing, and it never happened. I envy people who know how to sew. I could have made masks for people!

Enough ideas?

When I learned baking cakes and decorating with fondant and royal icing, I transferred all my knowledge to my sister in Ecuador. She has a cake business now. I just help with the designs every day, from the US. And with paper and jewelry, I was able to set up an etsy store for my aunt to sell the things I make. It's fun helping people too. I was going to try volunteering, but then the pandemic hit and now I can't.

When you get depressed and upset, you could certainly message people to talk, and it doesn't have to be abut the illness. I wish you health and lots of peace. And if you ever need anyone to talk, I'm here.

Molly110
Posts: 192
Joined: Oct 2019

Primavera, that's an amazing list of acquired skills! I would have been happy to learn any one of those things. How cool that you were able to help your sister and your aunt through the crafts you learned. When I was diagnosed I wasn't able to read for a while because nothing could keep my mind off of things, but I found doing stuff with my hands kept me from, as you said, thinking too much.

 

susanjmorgan
Posts: 1
Joined: Jan 2018

Hello Flufff - i was interested in knowing if either cbd or thc helped w anxiety. I am stage 4 ovarian 3rd recurrance. My dr has put me on zanex. Do the marijuana drugs make you feel "high"? I wouldnt want someting that makes me Think. I begin doxil and avastin next week. Praying it works.

i hope Your journey with this horrible disese is in remission. It is all so scary.

susan

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

Susan,

I wanted to let you know that our dear Fluff passed away in April.

I haven't taken CBD or THC, so I can't answer your question about them.

And I'm so sorry to hear that you're dealing with your 3rd recurrence. Other women here are also dealing with recurrences and some have taken doxil and avastin. So I'd like to suggest that you create a new post with this same question/information so that more members will see it. I'm afraid that your question might be missed in this older thread. Plus others will be able to share their experiences with doxil and/or avastin more easily that way.

See the option to "Add new Forum topic" above the topic list on the board's main page.

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

Fluff, I was 57, had just seen my last child graduate college and had spent the summer as a wrangler in WY, when I was told I had stageIII BC! Talk about a shock. I was finally going to be able to some ME things, but NO, 6 months of chemo, 6 weeks of rads and a gloomy prognosis. I did the fit thing where you throw pillows and scream at the heavens, but once I got that over with, this became my mantra and I repeated it daily: One day at a time. I then retired from teaching and took off to see the world - the US, Canada, Mexico, Thailand, Africa. I sold everything to be able to do this. I took jobs in these places - often teaching English. I had 25 years cancer free but then the tamoxifen I had taken created a tiny uterine cancer. So at 76, the hysterectomy, carbo/toxol and 25 pelvic and 8 brachys! A recurrence in 2018 and 2019. Last Oct. the doctor told me she had not been able to get all the cancer and I was in for a rough year. SURPRISE! My June 2020 scan showed no tumor where she had predicted! Even she had the rad doc read twice!

So, life from now on will never quite be as easy because there is that tiny fear all of us cancer folk have - will it return? So each of us has to find our own place of peace. I have taken up senior coloring and use the pages' backs as stationary to write my friends. I read a book a day and do water walking every afternoon. I also am working on muscle strength so come fall I can ride horses again. I am making the best of my 81st year. You'll find your ballast and the ship will sail well, even in stormy weather. Peace be with you. df

Forherself's picture
Forherself
Posts: 566
Joined: Jan 2019

written Donna Faye.   

oldbeauty
Posts: 317
Joined: May 2012

Donna Faye, you are an amazing woman.  What a story.  You write beautifully.  Best wishes, Oldbeauty

BluebirdOne's picture
BluebirdOne
Posts: 455
Joined: Jul 2018

As always, your words of experience and wisdom help all of us, and i, for one, so appreciate your inputs. Words of wisdom! 

xxoo

Denise 

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

Donna, I think you could put together a zoom class focusing on being brave and filling your life with joy and adventure, and all of us would just sit at your feet and learn how to LIVE!  Much love to you - thank you for encouraging us tonight - Pete and I are in one of the waves of grief over leaving the military and not making new friends quickly, and you assured us that our ship will sail!

MAbound
Posts: 1153
Joined: Jun 2016

Some states have lots of transplants. New Jersey is one of those places that my husband I moved to for his job and they had these newcomer clubs that were a lifesaver for adjusting ince it was our first cross country move. I think you said you were in NC now, so you could google North Carolina Newcomers Clubs to see if there is one handy to you. I highly recommend checking them out if you are having that kind of trouble with your move.

Molly110
Posts: 192
Joined: Oct 2019

It's lovely to hear how happy you are and how well you are doing. Donna Faye. Congratulations on the wonderful scan results.

Forherself's picture
Forherself
Posts: 566
Joined: Jan 2019

Prayers for clean scans.  The emotional effects of cancer are very hard.  I am an RN and I never appreaciate how true that is until I was told I had cancer.   When I was waiting for the results after my surgery, I made flannel pillowcases.   We have lots of little friends and neices and nephews who loved getting them.   There is such a vairety of fabric in flannel here.  I don't know about Denmark.   I also crocheted, as it is easy to take along.   Cotton washcloths are very popular as they work so well.  I love to read too.   Love in the Time of Cholera was a book I discovered and just loved.  Written by a man, a romantic novel, but beautifully written.  Mrs. Dalloway by Virginia Wolf.  Enchanted April don't know the author.  Pride and Prejudice by Jane Austen.  All happy books.   

Primavera's picture
Primavera
Posts: 227
Joined: Mar 2019

Forherself, I adored Love in the Time of Cholera. In Ecuador they made me read a lot of Gabriel García Marquez' books in high school, but I remember reading this one while I was here in the US already, because he wrote later, after getting a Nobel prize. Beautiful love story, and it was based on his parents love story.

Forherself's picture
Forherself
Posts: 566
Joined: Jan 2019

and just found this book.  It was beaitully written.  That it is true is even more charming.  

BluebirdOne's picture
BluebirdOne
Posts: 455
Joined: Jul 2018

So good. I also have been a big gardener, and continue to work as I can. I have gardens filled with native plants, which reward me with birds, butterflies, bees and insects. In the time of Covid, this keeps me occupied, focused and in the moment because everyday in the garden is different. It keeps me going to see the next butterfly, hummingbird, and bee. 

xxoo

Denise

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

Donna Faye! Awesome! Thanks.

Love and Hugs,

Cindi

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