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Avatar universal

EOT update - things definitely looking up!

Hi all,

After going through that terrible depression after treatment, I thought about time to give a wee update on where things are at now.

A quick recap - treatment stopped early at 34 weeks late October.  Still UND at 12 weeks post EOT and final test will be end of April  I went through a terrible black depression after treatment ended which was worse than anything I had to manage while ON treatment and ended up starting AD's AFTER treatment instead of during, as I managed very well while ON treatment.  So ..... where am I at now?

Well!!  

I started a new job two weeks ago, went from contract to full time permanent at a place I really like that's very solid and stable - as good as it gets in these times.  I'm really happy with this and there is plenty of opportunity within this company and I'm with a great bunch of people.  In these economic times, I feel incredibly fortunate to have landed this.

Physically, I feel *terrific*!!  I've just joined a Ladies squash league and while it's early days yet, I'm having a blast.  I'm not running yet, but will be working my way into it.  My plan is to focus on strength training, squash and getting back into my running over this next while.

I continue to be very involved with various organizations - professional ones and keeping my hand in my Hep C support group and trying to do what I can to create a better voice for Hep C in my area.

My mental outlook has *vastly* improved.  No depression.  I'm happy...exhilarated even.  I'm grabbing life by the handfuls.  I have a series of post-it notes on my bedroom wall that I've called "Trish's Hierarchy" (in honour of Mr. Maslow) and I've got plans, baby .. BIG plans.... to just surge forward and grab as much of life as I can from now until...well, forever!!

Spring is almost here and my bike will be back on the road again...the ride to work will be a lovely ride and I can hardly wait to get riding my Ninja again .. hardly got out at all last summer.

If there's anything that's not back to normal, I need more sleep than I ever used to.  I was used to being both a nighthawk and early bird for *years*.. to bed not much before midnight and up like clockwork at around 6am, a wee bit later on weekends but not a whole lot.  My daughter tells me that I should just sleep in like normal people...cheeky bugger.  (That's my OTHER daughter .... not Kelly who posted while I was out with surgery.  See a pattern here with my kids??? :)

I'm utterly enjoying my friends like never before .. busy with my social life and just exuberantly enjoying people and life in general.  SO much I want to do and I've got plans to make as much happen as I can.

I'm waiting on that final 6 month EOT PCR....like a plane going up the runway....getting ready for takeoff.  

I'm doing *great* these days!  It was really tough after EOT and I wanted to drop in and let people know that it has passed and that I'm doing very well.  

Thank you for everyone for all the encouragement and support...haven't forgotten all of you...still around, still reading and I post when I can and when something urges me to.

To everyone coping with their Hep C at whatever stage you find yourself at ... pre, present or post treatment.. or managing Hep C after failed treatment...my heart is with you and I wish you SVR and success...and contentment wherever you find yourself.

Trish
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Avatar universal
You really have taken the time to answer my question and it is much appreciated.  I recognise a lot of what you say - my bed is not my friend - great!  Also how invaluable the forum is.  I can't imagine how I would have got through without the people here helping me out.  I am lucky to have friends in my life who care about me, but with the best will in the world there's issues that hepC and tx bring up that only those who have been through it can relate to.  

Also interesting is your experience with the anti'Ds.  You know, maybe I just will go for them next time.

You've overcome 2 major challenges - hepC and the depression - so give yourself a big pat on the back.

All my best wishes,
dointime  
Helpful - 0
338734 tn?1377160168
Trish, I am so glad about how well you are doing now. I didn't really comprehend how difficult it was for you, and feel bad that it had to be so hard for you. You are an amazing fighter. Your kids are lucky to have a mom like you.

You have been a great support to me and others here. Thank you!

Brent

P.S. Just got back from San Diego where my son and his family live!
Helpful - 0
476246 tn?1418870914
Wow, it is so encouraging to hear that you are doing so well now, after all you've been through. I wish you hearty congratulations and pray that you will recover totally in no time!

God bless,

Marcia
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Avatar universal
Thank you so much for that.  I am grateful to you for being one of those people I reached out to who understood, encouraged and believed in me and let me know you were there if I needed you.  That is invaluable...to know you have resources if you need them and people who believe in you and care about you.

So good to hear from you.  Continue to be well and happy, my friend.

Trish
Helpful - 0
220090 tn?1379167187
I am so happy to see and hear how great you are doing.  I was always confident that you would win this battle and come out stronger than ever.

So cheers to your new found health and attitude!
Take care,
Eric
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Avatar universal
Have to mention another big HUGE turning point.

I posted here finally about what I was feeling.  And then all kinds of people came out of the woodwork then to share their own EOT experiences with depression.  I started to see that this was no isolated incident, that this is not an uncommon experience after EOT.  I wasn't crazy but I wasn't on solid ground either and others knew how I felt and others had gone through the same thing.  That was an invaluable help, the support and courage of others here who shared their own experiences.  

I took a chance here by posting and was honest finally about what was going on with me and why I hadn't been around and posting for awhile.  People shared their own experiences struggling with depression after EOT and some told me to go for the AD's, that they wished they had instead of suffering.  That helped alot.

This forum, yet again, helped incredibly much.  Was my lifeline during treatment and part of my salvation after treatment too.

Seems to be the key is ... don't try to do this all on your own.  Use whatever resources are there and whatever you need to help you battle it successfully.  And key seems to be... talk about it.  Get it out there.
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Avatar universal
"Good to hear that you are feeling great, and so soon after EOT.  

I'd be interested to know - what do you think helped get you over the depression?  Did the anti'Ds help in the end?  Was it finding out at 3 months post EOT that the virus was gone?  Was it just a matter of time getting over the toxic effects of the drugs?

I had a bad time after tx so any advice you have would help me for next time. "

First off, I'm sorry it's taken me a week to respond to this.  It's busy days at the moment and I wanted to take the time to answer this well.

You're asking how I got through that black depression - if the AD's helped, if finding out I was still UND at 12 weeks helped, etc.

By the time I got to my January 22nd appt for my 12 week EOT PCR, I was feeling the depression lifting.  I wasn't fighting off the really strong suicidal urges anymore and wasn't having any anymore.  I wasn't wishing I could die anymore and I wasn't feeling like my whole life had been a failure anymore.  So I can't say that knowing I was UND at 12 weeks was what helped at all, it was more like icing on the cake by then.  It certainly helped lift me even more out of it but by the time I got that news, I was already on my way.

Did the AD's help?  I asked my doctor that question at my Jan. 22nd appt.  I told him I couldn't tell if it was the AD's or how hard I battled it that pulled me up out of it and his point of view was that it was both.

As for the rest of it. Honestly, I fought this battle harder than my treatment.  So I grabbed for every resource I could, both within me and without me.

I spoke with the counsellor I saw every couple of months while on treatment and told him the straight dope on how I was feeling - that I had concluded that my whole life was a 100% failure and that I was fighting very strong suicidal feelings. He gave me strategies he wanted me to follow - talk to my friends and loved ones, don't isolate myself, go on AD's and if things got really bad, get myself to the hospital and check myself in.

I talked to a girlfriend who had struggled with chronic depression for years and had gone through suicidal periods and who was now doing well.  I knew she'd understand and I knew she'd have strategies to offer me and I knew she was one of the only persons who I could be honest with about how bad this was and I needed to talk to someone who truly understood.  She came over a couple of times when it was really bad and we talked gut level.

I talked to a few other friends that I knew I could trust who would know that this was not normal for me to be going through this.  They helped me separate fact from the fiction in my head.  The fiction in my head was pretty bad.  They knew different and it helped alot to have people thinking clearly for me when I wasn't able to do it for myself.  This is a good reason NOT to keep such things to one's self at times like this no matter how much it goes against the grain of someone's independence and nature to deal with things privately.  There are times to reach out and this seemed to be one of them.  I just refuse to go down.  I know my girlfriend was more prepared to go down than talk to someone.  I have three children who deserved better.  I started putting pictures of them all around the house so that I could see them all the time.  Sometimes I got scared because it was almost not enough.  But they were always there smiling at me .. and it kept me going for THEIR sake.

I just kept fighting hard.  I had responsibilities, a job to go to, committments to keep where others depended on me and I badly wanted to bail but kept forcing myself to keep doing these things and each thing I accomplished lifted my spirits. So I kept reminding myself how good I feel when I *accomplish* things so I kept trying to accomplish something and set myself goals to get this thing or that thing done.  I would feel really great for a few hours.  It was at least something and I kept trying to remind myself of what made me feel good for at least a little while and focus on doing those things and not let them slide.

I just fought hard.  All the time.  And realized that my bed was no longer my friend as it had been on treatment.  That it was my enemy now and getting OUT of bed was what I needed to do.  Just fight, fight, fight, fight, fight.  That's what I kept doing.  Analyzing all the time and trying to fight the distortions in my head and get back to reality.  Fight my way up out of the dark hole.

My kids came home at Christmas.  I could go into far too much detail about what good that did me.  I was honest with them too about what I was dealing with though stopped short of telling them about the suicidal tendencies.  Much to my shame, I did mention it to my one daughter and she was not happy with me and told me how it made her feel.  I was ashamed of myself.  I told her I would never do it and that I was fighting very very hard.  Tell others .. but  not your children...unless they are the ONLY people you can tell but I had other options.  Not my finest hour.

My kids being home at Christmas did me a world of good.  They are amazing people and they knew I was struggling hard to get back to a place where I was feeling hopeful about life again and they knew that I knew that I wasn't thinking straight but having a hard time finding my ground, fighting hard to break through and be "me" again.  They just quietly loved me and kept reminding me in gentle ways about who their mom was to THEM.  And as I enjoyed their company and the people they are and how successful they are in life ... I started to break through. My son would bring it to my attention too - "seems like you're starting to come around, Mom" and I would realize he was right. It gave me hope and encouraged me that things would get better.

By the time my kids started to go home one by one, my son to San Diego being the last one, the darkness was starting to lift.  It was still hard after they went home.  I still had to fight hard every frigging day to get out of bed, to go to work .. but suicidal tendencies had stopped.  Now it was just battling hard to continue to fight my way back and just not giving up.  Used mantras that helped .. still do.. still do every day say to myself "Do or do not.  There is no try."  

I've been off the AD's a week from last Thursday now.  Ran out of them, decided not to renew them.  So far so good.  I'm experiencing utter exhilaration sometimes.  So...it can be done, it seems.  I don't know if any of this helped.  I hope so.  And hoping next time is SVR for you and that things go easier for you EOT.

Take care.

Trish

Helpful - 0
Avatar universal
You guys are the best.  I really truly would not have made it to where I am without all of you.  The support I got when I outed myself on the depression was a lifeline for me along with other things.  I may have had really good QOL during treatment, however I was here most days and this forum was a big part of that.

Dointime, I will get to the answer to your question .. been thinking about it and I think it's an important question and the answers are important.  The answers people gave me were a help and I'd like to return the favour and hope it helps.  Will answer soon.

Portann, I stopped AD's as of last Thursday.  My script ran out and I kept forgetting to fill it.  The doc and I had agreed to keep me on them til end of April which would be six months post treatment and then go off them and if I got worse, to go back on them.  Well, when I ran out last week I decided, with a bit of trepidation to be honest, to stop now.  I've been feeling really good so I figured ... see how it goes with the same proviso - if I start tanking, I'll go back on them.  So far so good.  

Lala .. squash is a racquet sport - like handball only with racquets .. you hit a ball off a backwall to your opponent and it's a good fast-paced game.  You hang in there...have been watching your progress and not sure if you realize how well you've done from where you started - impressive journey, sugar.  Hoping hard for your SVR.

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Avatar universal
Trish, I LOVE hearing that you are feeling so well.  We don't get enough of that, not ever here.

I'm also just so pleased because it is you.  You worked so hard to get clear.  I'm glad that it is paying off so quickly for you.  Amazed in a way.  I keep hoping that the shorter courses of treatment will make for a quicker recovery.  Anyway.....so glad that when you finally HAD to quit you were clear for ever.

Good to see you bouncing back and filled with the joy of a new life.

enjoy.......

Willy
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Avatar universal
So happy to hear you're doing so well post treatment and so soon post treatment. Definitely the icing on the SVR cake!  However, for anyone that followed your treatment, it's not surprising how well you're doing because you did more during treatment than most of us did off!. I think you have nothing but up to look forward to.

As to your other post on support groups, I was actually asked by my NP to speak to a support group because I was double-dosing and doing high-dose ribavirin at a time when it was very unusual. Unfortunately, within a week's time I wasn't up for leaving the house much, not to mention attending a support group. To be honest, the privacy/stigma issue did enter my mind but don't think that alone would have prevented me from attending. Just more that I didn't really feel like doing much of anything during treatment plus I knew that if I did attend a meeting I'd probably just end up making trouble contradicting what the doctor's and nurses were telling the patients. So I stayed home and made trouble here :)

-- Jim
Helpful - 0
276730 tn?1327962946
SOunds great to me!! Wonderfuls news! Your grabbing life!
You go girl!
Wish you continued health and peace ALWAYS!

Charm
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146021 tn?1237204887
Whew! Your energy comes through your message as something almost tangible!
Congratulations! I hope all your dreams come true, especially SVR, which is right within hands reach for you now.
So glad that you are channeling all that energy into positive forces.
How awesome your post tx life has turned out to be so rewarding.
You go girl! Reclaim that life......it's just been out there waiting for you...
Bug
Helpful - 0
320078 tn?1278344720
Trish,

You sound wonderful!!! Its great to hear that you are doing so well!!  I am so happy that you are getting your life back!!!  Congrats!!!

peace
rita
Helpful - 0
547836 tn?1302832832
wow Trish, how inspirational!  sounds like you're *thriving* out there!  congrats on the new job and what's a squash league?  either way, sounds like tons of fun :)

best of luck with everything!
Helpful - 0
577132 tn?1314266526
Wow!  That is just such great news!  So encouraging to know we can get our lives back eot and then some.  Yay!  You deserve every wonderful thing that is happening right now and I just know you will go from strength to strength!

Much love!

Epi x
Helpful - 0
412873 tn?1329174455
She's baaaaaacckkk.....and better than ever!  Yay for you, Trish!!!!!  I am so happy to hear your great news.  

I watched you begin tx, and have been following you ever since.  You are a true pioneer and a powerful fighter.  You are an inspiration to so many.

Thanks for that =)

No matter how much we prepare for tx, we can never know what decisions we will be forced into until we get there. You showed us how to be our own advocates.  To own our health and tx-regardless of being in a trial or not.  I am so fortunate to have had your advice.  Especially in the early weeks....if I am successful in my tx...it will be-in large part-because of you and others here like you that give Great Advice!!!!!!!

Thanks for that, too!!!

You go girl!!!!

I wish you all the best, now and forever....and SVR for us all.

Love ya,

Isobella
Helpful - 0
408795 tn?1324935675
Good to hear you're doing well, I've been wondering about you.  If you're feeling good  and staying busy doing the things you love, you couldn't ask for more than that.  In fact, I think that's as close to happy as you can get.lol  good luck
Helpful - 0
Avatar universal
Trish,

It warms my heart to hear how well you are doing.  So many bright things in your life after such a dark, difficult time.  
I never once doubted your fortitude and knew you would rebound with even more strength and determination.
Wish you wonderfully fun and rewarding experiences as you pursue your new life and in my heart I know SVR is yours.
Stay well and happy my friend.  Never lose that zest for life I so admire in you.

Love
Trin
Helpful - 0
Avatar universal
Wow, Trish, that's wonderful to hear and impressive by any measure, let alone post-tx. Congratulations.

I can't even stand to LOOK at my bike these days. Right now, my one aspiration is to climb the stairs without panting.

Glad to hear about such spring renewal. Are you still on the AD's? If so, will you be tapering them at some point?

Sweet dreams and wishes to you,

xoxo
Port
Helpful - 0
Avatar universal
Good to hear that you are feeling great, and so soon after EOT.  

I'd be interested to know - what do you think helped get you over the depression?  Did the anti'Ds help in the end?  Was it finding out at 3 months post EOT that the virus was gone?  Was it just a matter of time getting over the toxic effects of the drugs?

I had a bad time after tx so any advice you have would help me for next time.

Thanks
dointime
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Avatar universal
Way to go! I can see the smile in your words, so proud of you!     It takes time, to feel better I know some are struggling now with that!

So your words are powerful to read.


xoxo Deb
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Avatar universal
So happy to hear that you are UND at 12 wks...and even happier that you are feeling so terrific now!!!!  It's kinda like " I'M ON TOP OF THE WORLD " feeling and I think it does come at different times for each of us after tx.  

I can really relate; I too had to start on AD's after tx and was never on them during tx.  I kind of felt like a basket case and the AD's really have helped.  I was working outside (yardwork) for most of the day and just enjoying the warm weather and really looking forward to spring and summer...it is going to be a good one!

Great hearing from you and again CONGRATULATIONS!!

Enjoying life,
TV
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Avatar universal
!!!  also still taking my evening courses... have some exams to study for and write by end of June ... yeehaw!!  :)  More courses to come but fun ones ... won't bore you with the details, just will be exploring many interests I've been wanting to get at for years that had nothing to do with my Hep C for why I haven't.  I don't know if this zest for life is from getting my life back ... but surely seems so.  I've always had it .. but *never* quite like this.  Honestly... I have never been any happier in my entire life than I am right now.  And I'm still single so there ya go... lol  :)

Trish
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