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Greetings from an old friend

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Hi everyone -

Liz in Dallas here.  For those new-ish to this board, I was 46 when diagnosed with UPSC 1A in October of 2011.  2 surgeries, 6 chemo treatments, 25 radiation treatments (external).  Last chemo was June 5 2012.

Here I am closing in on my 2-year 'cancerversary'.  Things are going well - I've been back at work full-time for nearly a year, and am gobsmacked with how good I feel (and with how much I adore having short hair).

Catching up on posts I am heartbroken that we've lost some sisters.  This board, and the courage of everyone who posts, helped get me through treatment.  I really don't know how I would have coped without this oasis, where no matter how bad the day was there was always someone who'd been through it too and was able to offer the shoulder, the laughter, and the encouragement to keep on keeping on.

For those newly-diagnosed, know that there *are* things to look forward to, including:

  • not having to shave your legs
  • not having bad hair days
  • that want-to-shave-my-head-and-start-all-over with the hairdo thing?  You got it, and you may be surprised how a little sass goes a long way
  • the kindness of people - I still remember being bald (after the first few weeks I left the turbans and wigs and scarves at home - I have a 'good skull') and I was at Costco one day, taking my cart back from the car and someone rushing to do it for me
  • meeting the strongest and most inspirational women ever through these boards and in the treatment rooms - and knowing that you are stronger than you ever thought you'd be and that you inspire other women whether you know it or not
  • seeing what amazing friends and family you have
  • the day you realize you are stronger now than you were before your diagnosis

Some of the women on this board have been fighting the fight for years.  Your grace, courage, and willingness to share are awe-inspiring.

Thank you to all of you, couldn't have done it without you.

 

Liz in Dallas

ConnieSW's picture
ConnieSW
Posts: 623
Joined: Jun 2012

'bout time!  I've often wondered how you are doing.  You were about a year ahead of me in treatment so your posts were timely and helped me know what to expect.  Glad you are living well.

 

PS I also found I look good with very short hair and have retired the blow dryer and hairspray.

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

It's amazing how much space I have in the bathroom now that I don't need product or appliances!

One of cancer's 'gifts'.

The best gift?  Seeing how your friends are truly your friends, and healing some familial hurts.

 

Liz in Dallas who got her first haircut in 3 months and loves saving the money/trip to the salon, too!

debrajo's picture
debrajo
Posts: 792
Joined: Sep 2011

Great to hear from you!...another UPSC sister doing good!  My UPSC was just like yours...1a and I just passed my three year with NED.  He sure has been good to me!  Congradulations and don't be a stranger...we've got some "newbies" here that need us old timers!  Best debrajo

nancy9
Posts: 35
Joined: Feb 2013

Hi Liz!  I am a newbie to this site, just a few months. I cannot believe how much I learn from these wonderful women everyday and how inspiring they all are.  My doctors thought I was stage 1 until my surgery, I was diagnosed at stage 3.  After months of chemo and 25 rounds of radiation, I am back at work for the last 2 1/2 months.  I am having a  difficult time focusing, processing, multitasking, remembering things (darn chemobrain), etc.  I am even emotional at times (i.e. crying).  It is very frustrating.  I feel like I am going crazy sometimes.  I am use to being able to do it all (talk on a conference call, respond to emails, answer question all at the same time) without missing a beat, but now I find it so hard to even process what people are asking.  I noticed, the more stressed I am, the worse it gets.  I am already finding ways to eleviate my stress.  I am a very laid back fun person normally, but I feel so off balance.  Did you have the same issues?  How did you manage? 

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Great to see you're doing well!!  Love the picture and now you undestand why we all love short hair...took loosing it to see how easy it is to take care of each day.  As Debra posted, don't be a stranger as we have some newbies here and they need some experience from the oldsters.  Sorta like our time to give back to help others.  

Nancy, Chemo brain is very real and I dealt with it for years, relying on post-its all over my home and car.  Don't know if this is helpful, but someone has mentioned a supplement called Acetyl Ch, which helps chemo brain.  I didn't try it as only found out about it 6 months ago.  Might be an option.  As well over the past year really adding lots of coconut oils in my cooking, food prep, etc, and come to find, this product is helpful with our brains.  My memory has gotten so much better and wondering if attributed to my consumption of coconut oil.  

Hugs,

Jan

 

nancy9
Posts: 35
Joined: Feb 2013

Thanks for the advice ladies.  I truly appreciate it.  I'll try the coconut oil.  I am not sure I like my new normal though.  LOL  Maybe its my body way of telling me to slow down. 

if i do too much, I get physically ill.  Is that normal?

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Nancy, you are not going crazy!  It's easy to get frustrated, but if you work amongst a supportive group it's also easy to laugh at yourself and move on.  And it's not necessarily permanent - long lasting, for sure, but I feel sharper mentally than before I was diagnosed.  

I *will* say this:  I have lost most of my ability to do math in my head!  Calculators are my new best friends.  I even have a hard time counting objects.  I do count myself lucky that that appears to be the worst of it.  Still, I'd say it was a good six or seven months post-treatment that I felt 100%.

Give yourself time and be patient with yourself.  The human body is amazing in how it heals from great trauma.

One thing that helped me cope with the stress is getting real particular about boundaries.  At the time I went back to work, I had an awful boss who wanted me to work 10-12 hours a day.  Instead of grumbling or trying to negotiate, I asked my doctor for a restriction for 2 months of zero OT and took it to HR.  That took care of that.

I've also become more particular about just about everything.  Life is a series of choices, and while I consider myself direct in general, I've gotten even more so about what I will and will not accept.  My desk has become a serious no-BS zone - I tell people what I want and why I want it, and if necessary why what I've ben given is unacceptable and needs to be redone.  At home, if I don't want to go out I don't, or I tell people I'm turning into a pumpkin at a certain time.  If I want something done around the house I do it instead of procrastinating.  (Or maybe that's me being a bit of a control freak after a period of being out of control.  Either way, I am protecting my own best interests.)

Fortunately I had amazing colleagues and partners and vendors and friends and family and they have been kind, cooperative, understanding.  I'm horrified when I hear about others being treated as if they haven't/aren't going through a major life event.

Just as you are your own advocate in terms of dealing with cancer, you are your own advocate for everything else.

You'll get your balance back - give yourself time.  You've been through what no one who's never had cancer will understand.

You go girl!

Liz in Dallas

nancy9
Posts: 35
Joined: Feb 2013

Hi Liz!  Sorry that it has taken me so long to respond.  I come home from work and I crash.  You sound so much like me.  I just don't have the time for the bs. It'slike I am done with it.  LOL  I work with wonderful people (my boss actually has/had a very rare form of cancer) and my family and friends have been amazing.  I am starting to get better.  It seems as though I have reached a plataeu.  You seem amazing and an inspiration to us all. 

 

Thank you for the advice.

 

Nancy

txtrisha55's picture
txtrisha55
Posts: 430
Joined: Apr 2011

I also understand about chemo brain, I still have bouts with it.  Mine is with short term memory, I forget what I was going for or doing.  My sister sometimes gets frustrated with me when I forget something she asked me to do and if I have done something in between then I forgot what she asked me to do.  I tell her Hey you know I cannot remember crap anymore, write it down and pin a note on me.  That usually defuses the situation.

 

Anyway I am glad to hear that you have passed the 2 year mark too! 

 

Nancy, Hang in there, life does get back to a new normal.  Remember we are here to support you.

 

Praying for all. trish

 

Ro10's picture
Ro10
Posts: 1474
Joined: Jan 2009

I am so glad you are doing well.  We all need to hear that.  You gave some great advice about things to look forward to for the "newbies".  Continue to celebrate life.

Nancy give your body and mind time to recover to the " new normal".  It has been a year since my last chemo and I still have periods of chemo brain.  I can understand you being emotional, too.  You have been through so much.  Glad you have found ways to de- stress your life.  In peace and caring.

Double Whammy's picture
Double Whammy
Posts: 2334
Joined: Jun 2010

Thanks for checking in.  Please continue.  It's always reassuring to know that you're still doing well.

Suzanne

nancy9
Posts: 35
Joined: Feb 2013

Thanks Ro Laughing

Kaleena's picture
Kaleena
Posts: 1213
Joined: Nov 2009

Nice to hear from you Liz!

 

Glad to hear that everything is going well.   Great positive advice for those newbies!  So happy for you!.

 

Kathy

Dee5678
Posts: 37
Joined: Feb 2014

Hi, I know this is a thread from last year, but I enjoyed reading all the advice here. I am a newbie with USPC and it is so heartening to hear from others with this diagnosis who are doing well.  Thanks to all who posted!

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