Cancer Support Group

[[Tr...]]

Hi people, good to hear that some are doing well and sorry to hear that others are not

As for me a few days ago I got the biopsy results for my 2 year check up and they were all clear, what a relief. I have been put on a 1 year check instead of every 6 months from now on.

As regards benzos I am a few days away from 12 weeks off and doing well, not quite as well as the first 2 months as I am suffering some GI and reflux issues along with a recurrence of very mild anxiety and headaches some mornings. The good news is that this is annoying rather than debilitating and is not slowing me down much. Tinnitus is still around but is either better or I have got used to it as I can go long periods without it bothering me.

 

Wishing everyone a relaxing memorial day.

 

2trusting

 

Hey 2trusting congrats on such a huge milestone!  2 years cancer free and 3 months benzo free, that's pretty amazing.  I'm so glad you updated us.  I have almost constant tinnitus too.  I've had it for...1 year and 3 months (not that I'm counting or anything:).  It's so much better than it was.  There were times I could barely hear people talking to me it got so loud!  Other days I would almost be in tears because it was so distracting.  Now it's much quieter😊.

 

I hope you get better with each day!

[[Tr...]]

Trying-

Glad to hear you got the "all clear" and are experiencing some periods of enhanced vision. It would be so amazing if you got your sight back 100%. I am rooting for this outcome. Congratulations too on making it 7 months benzo free. Soon it will be a whole year. I can't believe what I just saw looking at my own ticker. Wheee! Whoopie, way to go.

 

Hope-

Excellent news your scan was clear too. Sorry you are dealing with acid reflux and nausea. Keep on keeping on. Blessings to you.

 

I go back to the oncologist on the 7th of June. I'll get my lab the day before and then when I go in the next day I'm pretty sure he'll order me a new scan. I am hoping that after this one I can get my port out, the darned thing itches and has all this time for some reason. Reminds me to look up "port allergy" online.

 

I've been wondering if I should keep the hair I have that stayed and continued growing after the first shave (when all of this began) or if I should shave it off so it can all grow in at the same time. May just keep the growth I have even though it's on the thin side. It's around 2 1/2 inches in the longest places and thin for sure. What do you think, Trying and SS, and what did you do?

 

I think I'm doing a little better in general but for the last couple of weeks I've been doing just about nothing. It's OK, tomorrow I'll start walking again and go see my grandmother. I've been getting books from the library but may have overwhelmed myself by getting too many this time. I'm on a new med for my new dx of ADD called Strattera. Just seeing how it goes, it's not a stimulant.

 

I'm thinking about you too SS. Really hope you are doing alright for what the situation is. I also hope you are getting to experience as much ease and comfort as possible. Everything you mentioned you were doing sounded like you are following your intuition and doing what is right for you and I'm sure you're still doing that. Grateful for you and that you started this support group and for all the help you have been to me during the hardest time in my life. I always wish you peace, love and all things good.

 

Hi there Azalea,

 

I kept mine.  It wasn't super thin but it was fine (which my hair was anyway).  If it was very thin, like straggly looking I probably would've buzzed it with a guard (maybe a #4 or #5).  You should do what will make you feel better.  For me, I just left it.

 

How have you been feeling?

[[az...]]

Hello again Trying

 

I have decided to keep the hair I have. I guess it's not as thin as I was thinking? Maybe it is growing in. It's decent enough that I have stopped wearing my wig, which I'm glad for. I didn't think it was but my therapist said to go for it and I gave it a try and it of course feels like freedom by comparison so I am sticking with it.

 

I'm doing a tiny bit better as every week passes. I still have been lounging around quite a lot but seeing my grandmother, making it to a couple women's AA meetings every now and then, seeing my therapist and getting caught up on doctors appointments other than the oncologist are all taking up some large portions of some days and are all helping.

 

I still have a bunch of books I've been gathering from the library, but the last novel I got isn't quite cutting it. I saw today when I was there that they are doing a seed exchange or seed library thing at one of the branches nearby. I am thinking of following through on SS's suggestion of making my own little garden. I will name it after the three of you with a little sign when I get the basic structure down with some seeds in the ground. Maybe I will call it "the Trying, Hope and Solitude garden." I think I will keep the sign and try to have at least a small garden to put it in wherever I go in life.

 

I have been enjoying KQED/PBS TV. I watch shows on all kinds of things on there but they have been doing a series on American Masters who are chefs, like Alice Waters and Jacques Pépin that have been good. I like the cooking shows we get here on Saturday and part of Sunday every week here too. I tend to gravitate toward shows on Alaska, though not all of them, and I have a really terrible show I am beyond embarrassed to admit I watch called "Married at First Sight." It's awful but I can't believe people do it and I have to see what happens. Another shameful show admission is "Little People, Big World." It's really dumb also but I think it's inspiring. I watch too much TV but that's OK.

 

Hm, other than that I walk sometimes and am pleased to be able to say that I have lost about 5 or 6lbs.

 

Also, I found a website called "ihadcancer.com" or org or or something and I'm finding that quite helpful.

 

One thing I am resisting is doing the amount of cleaning I really should be doing around the house. Vacuuming and dusting are the two chores that are extra far over-due, there are others too but those are pretty bad.

 

All in all I am better but still feeling far from "great." Guess I opted for an extra long answer to your question.

 

How are you??

[[Ho...]]

Hello again Trying

 

I have decided to keep the hair I have. I guess it's not as thin as I was thinking? Maybe it is growing in. It's decent enough that I have stopped wearing my wig, which I'm glad for. I didn't think it was but my therapist said to go for it and I gave it a try and it of course feels like freedom by comparison so I am sticking with it.

 

I'm doing a tiny bit better as every week passes. I still have been lounging around quite a lot but seeing my grandmother, making it to a couple women's AA meetings every now and then, seeing my therapist and getting caught up on doctors appointments other than the oncologist are all taking up some large portions of some days and are all helping.

 

I still have a bunch of books I've been gathering from the library, but the last novel I got isn't quite cutting it. I saw today when I was there that they are doing a seed exchange or seed library thing at one of the branches nearby. I am thinking of following through on SS's suggestion of making my own little garden. I will name it after the three of you with a little sign when I get the basic structure down with some seeds in the ground. Maybe I will call it "the Trying, Hope and Solitude garden." I think I will keep the sign and try to have at least a small garden to put it in wherever I go in life.

 

I have been enjoying KQED/PBS TV. I watch shows on all kinds of things on there but they have been doing a series on American Masters who are chefs, like Alice Waters and Jacques Pépin that have been good. I like the cooking shows we get here on Saturday and part of Sunday every week here too. I tend to gravitate toward shows on Alaska, though not all of them, and I have a really terrible show I am beyond embarrassed to admit I watch called "Married at First Sight." It's awful but I can't believe people do it and I have to see what happens. Another shameful show admission is "Little People, Big World." It's really dumb also but I think it's inspiring. I watch too much TV but that's OK.

 

Hm, other than that I walk sometimes and am pleased to be able to say that I have lost about 5 or 6lbs.

 

Also, I found a website called "ihadcancer.com" or org or or something and I'm finding that quite helpful.

 

One thing I am resisting is doing the amount of cleaning I really should be doing around the house. Vacuuming and dusting are the two chores that are extra far over-due, there are others too but those are pretty bad.

 

All in all I am better but still feeling far from "great." Guess I opted for an extra long answer to your question.

 

How are you??

 

I love the garden sign idea! What a special name!

 

[[az...]]

❤️👍 ️Thanks Hope

[[Tr...]]

Hello again Trying

 

I have decided to keep the hair I have. I guess it's not as thin as I was thinking? Maybe it is growing in. It's decent enough that I have stopped wearing my wig, which I'm glad for. I didn't think it was but my therapist said to go for it and I gave it a try and it of course feels like freedom by comparison so I am sticking with it.

 

I'm doing a tiny bit better as every week passes. I still have been lounging around quite a lot but seeing my grandmother, making it to a couple women's AA meetings every now and then, seeing my therapist and getting caught up on doctors appointments other than the oncologist are all taking up some large portions of some days and are all helping.

 

I still have a bunch of books I've been gathering from the library, but the last novel I got isn't quite cutting it. I saw today when I was there that they are doing a seed exchange or seed library thing at one of the branches nearby. I am thinking of following through on SS's suggestion of making my own little garden. I will name it after the three of you with a little sign when I get the basic structure down with some seeds in the ground. Maybe I will call it "the Trying, Hope and Solitude garden." I think I will keep the sign and try to have at least a small garden to put it in wherever I go in life.

 

I have been enjoying KQED/PBS TV. I watch shows on all kinds of things on there but they have been doing a series on American Masters who are chefs, like Alice Waters and Jacques Pépin that have been good. I like the cooking shows we get here on Saturday and part of Sunday every week here too. I tend to gravitate toward shows on Alaska, though not all of them, and I have a really terrible show I am beyond embarrassed to admit I watch called "Married at First Sight." It's awful but I can't believe people do it and I have to see what happens. Another shameful show admission is "Little People, Big World." It's really dumb also but I think it's inspiring. I watch too much TV but that's OK.

 

Hm, other than that I walk sometimes and am pleased to be able to say that I have lost about 5 or 6lbs.

 

Also, I found a website called "ihadcancer.com" or org or or something and I'm finding that quite helpful.

 

One thing I am resisting is doing the amount of cleaning I really should be doing around the house. Vacuuming and dusting are the two chores that are extra far over-due, there are others too but those are pretty bad.

 

All in all I am better but still feeling far from "great." Guess I opted for an extra long answer to your question.

 

How are you??

 

Hi Azalea,

 

Sorry I took so long to respond.  I read your post right away.  I always read everyone's posts but often am too tired to write.  It sounds like you have a lot of good plans.  I absolutely love the garden.  The fact that you even thought of that name means so much to me!  Thank you:)

 

You keep doing the best you can and stay in touch when you're up to it!

[[az...]]

OK Trying, hope you can get all the rest you need.

[[Tr...]]

Hi everyone,

 

I got positive results of a colposcopy and have to have another one.  It was pretty uncomfortable the first time so I'm not looking forward to it!  I'm also not thrilled that they found abnormal cells.  I go again on July 3.

 

Other than that I'm doing pretty good.  I've had an increase in symptoms over the past couple days (more anxiety, some breathlessness, and being lighthead) but we're in a heat wave here so that doesn't help.

 

I've been thinking about everyone and hoping that you're all making progress!  I keep fighting my way back.  It feels like it takes all I've got to make any gains...everything takes a lot of work!

 

Take care

[[az...]]

Geez. I am so sorry. I have to go back for another colposcopy too- next week. They found abnormal cells last year. Positive, really? Shit.

 

Hoping it cools down over where you are.

[[Tr...]]

Geez. I am so sorry. I have to go back for another colposcopy too- next week. They found abnormal cells last year. Positive, really? Shit.

 

Hoping it cools down over where you are.

 

Thanks Azalea!  Yeah, I was pretty bummed that the test showed abnormal cells but they said they didn't know what type.  I think they may have not done the test thoroughly enough the first time (only 2-3 weeks ago) because they said they need another sample...

 

I'm doinig OK emotionally now.  It only took me a day to chill out.  I have a strict rule that I try to live by which is to not project!  To not worry or react to things that haven't happened yet.  This situation was a good test.  I'm going to just hope the next test shows a better result and just live my life in the mean time. 

 

How have you been feeling?  Anything new happening?  You getting stronger?

[[az...]]

I agree about not stressing out before I know anything. I forgot if last year I had two colposcopies. I don't think I did but I really can't remember for sure. Not looking forward to going back either, it's next week.

 

I got my port out this last Wednesday but have been having migraines and I think it's due to the ADD med I have been trying called Strattera. I had been/have been experiencing extreme irritability on it also (especially last week) but was trying to tough it out because symptoms like this can resolve after 4-8 weeks. With migraines though, I don't know. I don't think I'm willing to suffer this much and then suffer again when I would be scheduled to increase the dosage. I have also experienced hot rashes and flushing, especially on my neck- yet another side effect. I already have trouble with migraines and heating up/rashes like this, so I am pretty sure I won't be taking this anymore! Also, after all I've been through and all the agitation I've experienced as a result this year I feel I really just don't need any more of that either.

 

Anyway, I was stuck in my room all of last week as a result of the irritability and now this week it's been migraines... Plus, some sleep disturbance. It's hard to tell how I'm doing. Glad to have my port out though.

[[Ho...]]

I'm putting this out here for the U.S. peeps who want to help with Benzo Advocacy. Please PM me with any questions!

 

Hello beloved benzo friends! As you know, World Benzo Awareness Day is fast approaching (7/11) and I have taken on a position as a director at the Benzodiazepine Information Coalition. BIC and W-BAD are collaborating on an initiative to get patients to fill out FDA Medwatch reports regarding how they were harmed by benzos or Z drugs. The form is an easy online submission and can be accessed here:

 

https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?action=reporting.home

 

For more background on the initiative and detailed instructions on filling out the form:

 

https://www.benzoinfo.com/fda-report

 

Once you have completed the form you will receive an email confirmation from Medwatch. Please forward the email to fda@benzoinfo.com by 7/11 and you will be entered into a prize drawing for an Amazon gift card valued up to 100$. Your email address and info are confidential and will only be used for purpose of counting submissions and the prize drawing. Thanks in advance for your help!

[[Tr...]]

I agree about not stressing out before I know anything. I forgot if last year I had two colposcopies. I don't think I did but I really can't remember for sure. Not looking forward to going back either, it's next week.

 

I got my port out this last Wednesday but have been having migraines and I think it's due to the ADD med I have been trying called Strattera. I had been/have been experiencing extreme irritability on it also (especially last week) but was trying to tough it out because symptoms like this can resolve after 4-8 weeks. With migraines though, I don't know. I don't think I'm willing to suffer this much and then suffer again when I would be scheduled to increase the dosage. I have also experienced hot rashes and flushing, especially on my neck- yet another side effect. I already have trouble with migraines and heating up/rashes like this, so I am pretty sure I won't be taking this anymore! Also, after all I've been through and all the agitation I've experienced as a result this year I feel I really just don't need any more of that either.

 

Anyway, I was stuck in my room all of last week as a result of the irritability and now this week it's been migraines... Plus, some sleep disturbance. It's hard to tell how I'm doing. Glad to have my port out though.

 

Congrats on getting your port out!  I bet you're happy to be free of that thing.  Sorry to hear about your other issues though.  Remember that your body is more sensitive now so what worked for you before may have a different result now.  What makes you feel better or what you think will help you feel better, do! 

 

I remember getting so frustrated about how to get better after chemo.  Finally, I just started my own plan.  I was tapering off Ativan but "coming down" from treatment.  My body was a little like a pin ball machine (I'm dating myself:).  Anyway, even though results visually were super slow.  My plan did help me get stronger rather quickly considering.  Do what you want then listen to your body.

 

I'm proud of you!  You've fought super hard through a lot of scary times.  Now it's time to wind down.

 

 

 

 

[[Tr...]]

I had my 2nd colposcopy today.  The person who did my test today was much better than the last one.  She said she could see the inflammation from the last biopsy and went to a different area and scraped instead of using the vinegar stuff.  Thank God because the stuff burned me last time even though she said it shouldn't have.  So a week or 2 I should get the results. 

 

Been thinking about SS.  Wondering how she's doing.  Has anyone kept in touch with her?  I miss her! :'(

[[Ho...]]

I had my 2nd colposcopy today.  The person who did my test today was much better than the last one.  She said she could see the inflammation from the last biopsy and went to a different area and scraped instead of using the vinegar stuff.  Thank God because the stuff burned me last time even though she said it shouldn't have.  So a week or 2 I should get the results. 

 

Been thinking about SS.  Wondering how she's doing.  Has anyone kept in touch with her?  I miss her! :'(

 

I will pm you.

[[Tr...]]

I got the results today and all is clear:). Thought I'd update.  Got to keep prepping for my kids birthday party tomorrow.  We're having a BBQ.  I'm so tired right now but looking forward to celebrating and eating!

 

Love to all

[[Ho...]]

I got the results today and all is clear:). Thought I'd update.  Got to keep prepping for my kids birthday party tomorrow.  We're having a BBQ.  I'm so tired right now but looking forward to celebrating and eating!

 

Love to all

 

Good news!

[[2t...]]

Trying, great news on the results.

 

2trusting  :thumbsup: :thumbsup:

 

[[Ho...]]

It is with deepest sorrow that I announce the passing of our dear friend Solitudeseeker. SS passed away from terminal ovarian cancer, although her death was hastened by benzodiazepine withdrawal syndrome, since it kept her from pursuing life-extending treatment. She was a strong proponent of death with dignity, and she passed away peacefully this morning at Dignitas in Switzerland via physician assisted death, with two close friends at her side.

 

I first met SS on Benzobuddies' cancer support thread. We formed an instant bond, and not just because we shared cancer and benzodiazepine withdrawal. I grew to love her dearly and consider her to be a kindred spirit. SS was brilliant, witty, determined, and pragmatic. She was extremely tough and brave and faced death head on. She continued to work throughout her ordeal, even training someone to take her place after she was gone. Above all, she was a loving mother and an excellent friend. I will miss her more than words can express.

 

SS was extremely dedicated to raising awareness about benzodiazepine withdrawal syndrome. In the last weeks of her life, she prepared pamphlets of benzo educational materials along with a personal letter to be mailed to the doctors involved in her care. She continues to spread awareness even after her death, as she mentioned benzodiazepine withdrawal syndrome in her obituary.

 

I had the privilege to speak with SS over the phone days before her death, and she wanted me to share all of this with the benzodiazepine community. I have enclosed a copy of the open letter she wrote for us in June. Please share her story, as she wants it to be told.

 

 

https://www.benzoinfo.com/single-post/2017/06/04/An-Open-Letter-Ativan-Stole-My-Only-Remission-From-Terminal-Cancer

[[Ch...]]

I am so sorry for your loss and everyone else's loss, Hope.  I read this story on BIC's FB website this morning.  It is extremely powerful. 

 

Take care, Hope, and everyone else on this thread who knew her.

 

Challis

[[Ho...]]

I am so sorry for your loss and everyone else's loss, Hope.  I read this story on BIC's FB website this morning.  It is extremely powerful. 

 

Take care, Hope, and everyone else on this thread who knew her.

 

Challis

 

Thanks Challis 

[[Gr...]]

Wow.  I just read the letter.  May she rest in peace.

[[Be...]]

So sad.  I hope her daughter will be well taken care of and I hope she was able to attend her graduation which she wanted to do so much. 

[[Ho...]]

So sad.  I hope her daughter will be well taken care of and I hope she was able to attend her graduation which she wanted to do so much.

 

She did make the graduation and her daughter has plenty of family support. SS made sure she would be well taken care of.

[[ma...]]

Dear Hope, I am so very sorry to hear of Solitudeseekers passing.  I hope that the love of her friends here will comfort and strengthen you in the days ahead. My heart goes out  to her family and friends here, at this very sad time. 

 

Thank you Hope, for providing the link. What an amazing lady she was, such a powerful letter

 

Magrita  :'(