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Baby steps back to normal life

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

Yesterday I got my car running again--it hadn't been driven since last fall, while I was in treatment. I've been relying on rides from my dad for too long (though it gave us lots of time together, which we both enjoyed). I'm back up to full speed at work and have a full head of curly hair, ready for my first haircut. Sometimes it seems like the cancer diagnosis and months of treatment were something that happened to someone else--but those moments are brief, because I always have it in the back of my mind that I'll find out about a recurrence any day now. Oh, and I'm also still dealing with neuropathy, so that's a reminder. I think my family wonders why I'm not more carefree, since they think I'm well; they don't know that I think it's only a matter of time until I get bad news again. I'm enjoying many, many things and I think I am doing a pretty good job of getting on with life. But in some ways I find this part harder than when I was in treatment, with a clear plan ahead.

SandyD's picture
SandyD
Posts: 130
Joined: Oct 2015

Becca, you're speaking for most of us who've been through this and describing the sense of uncertainty we experience very well. Thank you for starting this conversation. I think that those who've not had to travel this road often find it hard to understand why we don't simply resume our previous life with everything back to where it was before. For me my whole understanding of myself and what I see as priorities has changed. For better or worse I do now think of myself as a person who has had (and in my case, once again has) cancer. That sense of uncertainty has very much marked my life beginning with my initial diagnosis and, like you, after I was told I was NED. I too have the physical reminders of treatment such as neuropathy. I understand what you're saying about feeling less carefree than before. It's hard to resume a happy, carefree life again once the other shoe has actually dropped. As a result of my diagnosis (and now with a recurrence) I've also found myself rethinking my philosophy of life and priorities. I have decided that "living in the moment" and thinking less about long term plans is important for me. I'm trying to savor the moments of joy when they occur and to hold on to them. I also have become closer to family and, living at a distance from my family members, am prioritizing travel to spend time with them. I don't know that this is a better or worse place to be than where I was pre-cancer but cancer has definitely resulted in me being in a different place than I was before. 

Hma4's picture
Hma4
Posts: 38
Joined: Jan 2017

Amen ladies. I know what you both said is true for me also- i need a shirt that says "cancer survivor- bumpy road ahead" lol

janaes
Posts: 800
Joined: May 2016

Hey becca its good to hear from you.  Im glad you are getting on with your job an life.  I too think my family thinks all is well at times.  But truly that dumb reacurance word goes through my mind too.  In fact I have my first cat scan in about two weeks i think it is.  How can a person not think about the possability of a reacurance.  I hope mine is clear in June and all is well.

I wish you well as you keep going forward and make sure you enjoy your car.

Love,Janae

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Becca, it's so great to hear that life is getting to a new "normal" for you. That is progress and don't discount it. Family and friends will probably never understand that the end of treatment is just one small step and not really the "end" of this diagnosis (unless they experience it themselves, heaven forbid). 

I think that it's probably a bit of PTSD that we all have to deal with. It's hard to just move on when there is always the lingering fear of recurrence. The best way I found to cope is to try to find my passion again. I ask myself, what was it that made you fight so hard during treatment? Or, when you first received the news, what was it that you felt you were losing and were desperate to keep? I use the answer to those questions to focus my thoughts whenever the little voice of fear and doubt creeps into my head. I figure that since thoughts are something I can control, I will do everything in my power to keep them targeted on the positives.

Hang in there. It will get better.

 

daylady's picture
daylady
Posts: 122
Joined: Dec 2014

Becca, I was diagnosed in Jan 2014, and did surgery, radiation, chemo and my first recurrence occurred within 6 months.  Two more chemos, and NED and the next recurrence was within two months.  I have basically been in some kind of treatment on and off for almost the whole 4 years.  It turned my life inside/out but most of the changes I made personally were positive changes that improved my life a lot.  Beyond that, it finally dawned on me that we all go through moments of fear, and depression but the reality is that almost nothing happens quickly with this disease.  So long as you stay focused on taking care of yourself and staying as healthy as you can, there is generally time to figure out what the appropriate next step should be, or wait for the right answers to work themselves out.  You really have to be totally engaged in the things that bring you joy and happiness, and you have to have a list of things that you can pick up and do in those times when you are low.  You owe it to yourself to work yourself out of those spots because they carry a chemistry that is not good for us.  For me, I will watch a funny movie, or turn on the lights and read something light or inspirational, or I will pick up needlepoint or knitting which takes most of my concentration.  Eventually dark clouds will pass.  And you can always write to us on the Board.  We are great listeners! - Hugs., Helen

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Becca, I've hesitated to respond because I wanted to say the right thing, but I realize that's not going to happen because words have been failing me lately. I just wanted to thank you for speaking up, and echo Kvydson's sentiment that we all have PTSD from this damn thing. And many thanks to Helen for the reminder that you'll have enough time to figure out the next steps IF you have to deal with a recurrence. I think the underlying issue for me, and perhaps many of my generation (I'm turning 60) is that we only have two models for cancer: the apocalyptic, i.e. "Uncle Fred went in for cancer surgery but they closed him right up because it was everywhere and he was dead in 6 weeks" or, conversely, the "They cut it out and and now it's all over and she's back to her regular life". Neither are the case for us, and as a result I'm struggling to find a different way to think about my life now. If I'm not cured and I'm not dying, then what am I? I struggle with that every day, along with blind panic and denial. Conversations like this are another reason I bless this board, because it's not the kind of thing you can really talk to your friends about. Thank you for starting the thread, and we're all there for you. Best, B

Donna Faye's picture
Donna Faye
Posts: 392
Joined: Jan 2017

We all belong to a sisterhood we wish had skipped us, but alas it did not. I am feeling frustration at the moment with blood clots in lungs just when I had completed chemo and was ready to celebrate. Now on blood thinner and looking at a new set of problems. At 77, one measures quality of life more than anything and we all have had to adjust again and again. My family is my rock and let me say, my 2 son in laws have gone way beyond the call, as one is giviing me my shots until I woman up and learn to do them myself !  Life has many surprises indeed.

Nellasing
Posts: 529
Joined: Oct 2016

I'm so sorry to hear about the blood clots in your lungs!  I am having my own challenge with blood thinners.... urgh!  So glad your family is your rock and your son in law is giving your your shots!  My hubby did mine- I sware about every other one was dull.... not my imagination he thought so too!  lol  All the best as you get beyond this (((HUGS)))

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

I'm so touched when I read these comments. I want to bookmark this thread and come back to read it again. You don't know how much you help me, ladies! Wishing you all the best as you continue on your journeys.

StrongerthanIthought's picture
StrongerthanIthought
Posts: 55
Joined: Feb 2014

I am 2 1/2 years NED. I agree with what has already been said. There is a new normal, a recurrance stays on my mind (sometimes in the back & sometimes it pushes its self to the front), lasting aftereffects of treatments.  BUT so blessed to be here! Every day gives me another chance to enjoy my family and make sure they know how much I love them,

Hope & prayers, Barb

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

I am one year NED and most of my days are wonderful even with neuropathy and bowel issues. Yes, I still worry about reoccurrence, but I'm so thankful to have this group to voice those fears. Correct there are few friends that really understand this except I am lucky enough to have two cancer survivor friends who do understand. Bless us all with our new normal.

Hma4's picture
Hma4
Posts: 38
Joined: Jan 2017

Ditto happy to be here and able to spend extra time with my kids and grandkids- which by the way I will have anew one in Dec! We find out gender next month! Cancer can kiss- you know the rest lol

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