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Treatments done but . . .

Yeo's picture
Yeo
Posts: 23
Joined: Nov 2019

Hi, I was diagnosed last fall 2019, with carcinosarcoma.  Had surgery immediately was then diagnosed at Stage IIIc.1 - radical hysterectomy and 6 cycles of carbo. and taxal with 28 radiation sessions sandwiched in between.  CT scans shows NED - and yet I am struggling mentally with moving on - I have this constant awareness that my time could be very limited or (I could be lucky and be in the 28%) and it just feels overwhelming at times - I am about to start a new career as soon as COVID 19 levels out but I still feel very much like cancer women when I am with others.  My last chemo was April 13th and I know that is not long ago but I do not want to waste time.  I need a new perspective, and suggestions or insights?

cmb's picture
cmb
Posts: 531
Joined: Jan 2018

First of all – congratulations on being done with treatment, especially since your last chemo sessions were happening while the Covid-19 pandemic was really beginning to impact health care. I can only imagine how much more stressful that made the process.

I wish that I could give you an answer that would help you in how you are feeling right now. But I can only speak from my own experience with Stage IIIB uterine carcinosarcoma.

Honestly, I still think about cancer every day. But it's not the same now as when I was diagnosed or in treatment. Initially, I was pragmatic enough to know that the long-term prognosis wasn't great. But as time has passed since my treatment ended in September, 2017, I'm thankful to still be NED, especially when this type of cancer often recurs during the first year or two.

It did help that I could go back to work full-time when I finished radiation, although I had been working part-time through most of my treatment period. And while I first focused mostly on short-term life/work goals, I've gradually become more long-term in my thinking/planning as time passes. I've also made sure to spend time with those family and friends who mean the most to me and to make time for those things that I really enjoy doing.

While I don't shy away from saying that I had cancer, I didn't really talk about it with most of the people I worked with or any of my clients. My close colleagues knew, of course, and perhaps they shared this information with others, but my illness was not a regular topic of conversation. So there were long periods in each day when cancer was not front and center in my thoughts.

This board has been a great place to come to for when I do want to engage with others who understand this crazy cancer journey that none of us wanted to take.

Yeo's picture
Yeo
Posts: 23
Joined: Nov 2019

Thank you, I am hoping that once I start working I will be preoccupied with work and not so much myself. 

MAbound
Posts: 1065
Joined: Jun 2016

Getting a cancer diagnosis is like getting struck by lightning. You'll never feel as invulnerable as you did before. How could you?  What you are struggling with now mentally is going to teach you to make the most of each moment because of that threatening cloud following you around. Live your life, enjoy that reprieve, and as time passes trust that it won't occupy as much of your thoughts as it does now. It's going to take time NED to trust that you've dodged the bullet, but in the meantime it wouldd be a shame to give cancer any more of the time that it has already taken from you.

Yeo's picture
Yeo
Posts: 23
Joined: Nov 2019

MAbound, that is the perfect discription for the cancer diagnosis - it was so like getting struck by lightning.

Maxster
Posts: 39
Joined: Apr 2020

MAbound, I cannot begin to explain how I was struck by your words: "...it would be a shame to give cancer any more of the time that it has already taken from you".  I will bring those thoughts to my mind when I begin to perseverate over the possibility of recurrence and just general preoccupation with the disease.  I have felt robbed of a whole chunk of time and I don't need to give this disease anymore space in my head.  Thank you so much.

Forherself's picture
Forherself
Posts: 421
Joined: Jan 2019

It is so hard.  I remind women that we can actually suffer from Post Traumatic Stress Disorder.   If you look up the symptoms you might recognize some of your feelings.  It might help to have some counselling how to deal with it. You might ask your family doctor.  Time does help.  And I found that new situations and new locations wer very helpful for me.  A new park or new drive.  It's even harder now with COVID.   I hope ou can find a little respite from your worry.  And remember the worry doesn't accomplish anything.  

 

Yeo's picture
Yeo
Posts: 23
Joined: Nov 2019

Thank you, I will try adding some different walks to my program, I do have a tendency to get stuck in routines.

Molly110
Posts: 131
Joined: Oct 2019

My suggestion would be to remind yourself that you just finished chemo a very short while ago, and it's very natural to still be scared of dying and shocked that this happened to you. Since you did carbo/taxol, you likely lost your hair, and that is a daily reminder of what happened to you. Chemo and radiation can be tough and frightening, yet you made it through, and that is something to be proud of!

I finished chemo in January, after being diagnosed in August with USPC (UPSC?). Althogh I was stage 1, I knew from what my doctor told me at diagnosis that it is an agressive cancer that often recurs and is often fatal, so for the first couple of months all I could think of was dying. Then I went through several months feeling more hopeful, by which I mean that I began to think about my future and make plans again at the same time that I was getting my affairs in order. 

Now, six months after my last chemo, I usually only think about dying when I come to this site. What I have learned here that may help you is that many women with agressive cancers who are stage 3 are still here and doing fine years and years after their treatment is over, while many women who were stage 1 have passed away. Knowing that may help you focus less on the survival pecentages and feel more hopeful.

Once I decided to do the chemo and radiation, all I could think of was making it through and forgetting that this happened to me.  That was naive. I have pretty serious periperhal neuropathy from the chemo, and my hair is growing back very slowly -- less than an inch 6 months post chemo -- so both of those things are daily "reminders," although I wonder if anyone who gets a serious cancer diagnosis and undergoes months of treatment ever really forgets? What I can say from my own experience and from learning from the other women who post here, is that time really does help heal the emotional wounds and cushion the fear. I am much less anxious now, at six months out than I was when I was three months out, as you are now. If you are still feeling a little weak or tired after completing chemo, that may also be affecting your frame of mind.

I hope your plans for a new career help you get through this time, and I hope every day that passes brings you closer to calm and peace of mind.

Yeo's picture
Yeo
Posts: 23
Joined: Nov 2019

Thank you, I also have periperhal neuropathy, my hands or fingers are better but my feet still cause me trouble.  My hair is minimal but grateful it is returning - and I think you are right in that we will never forget but I was hoping for a quicker new normal but I guess I just have to be patient.  

Molly110
Posts: 131
Joined: Oct 2019

I think telling someone -- or ourselves -- to be patient is fine if the outcome is inevitable, but for many of us, it isn't. I don't know if my hair will come back as it was, so when I tell myself to be patient about my hair it never works, and I end up judging myself for being impatient. I am tryng to be kinder to myself and to judge myself less often and less harshly. 

I agree that counseling is great, if you can find a good counselor. Don't be afraid to "interview" the counselor to help you decide about a good fit for your needs. The center where I got my chemo had social workers on staff, but I wasn't ready for it at the time. One of the most helpful things for me has been talking daily with a friend who is himself a cancer survivor. He gets it. He really understands the fear and the longing for normalcy. 

I'm sorry that you also have neuropathy in your feet. I don't know how to check posts while I'm writing a comment, so I don't know if I've already told you that I am finding acpuncture wonderfully helpful with my neuropathy. Good luck with yours.

 

CheeseQueen57's picture
CheeseQueen57
Posts: 931
Joined: Feb 2016

I highly recommend a good counsel or and if you can find one, someone familiar with cancer survivorshi. Don't try to go it alone. 

Yeo's picture
Yeo
Posts: 23
Joined: Nov 2019

Thank you - I tried when I first was diagnosed but I think I need to look for someone who is familiar with cancer survivorship as you suggested.

EZLiving66's picture
EZLiving66
Posts: 1428
Joined: Oct 2015

Maybe this will help? When I was first diagnosed after my hysterectomy I thought I was going to die. I checked the internet for survivor percentages and it didn't look good at all - 70 to 84% of the women with my kind of cancer and stage were dead by five years. So I sat around and waited to die. I didn't buy any new clothes or shoes or much of anything. My surgery was on September 30th, 2015. On February 7th, 2017 I was reading the paper, and there, in the obits, was my oncologist/gynecologist's PA. She was the one who had released me from the hospital after my surgery. We sat together for about two hours waiting for the doctor to come. She told me she was 39 years old, a vegetarian, ran marathons, etc. I had just seen her in December of 2016 and she was fine. She was assisting in surgery in January, was feeling sick, was diagnosed with brain cancer, and died at the beginning of February. 

I bet I read that obit at least five times - I was in shock! Right then and there I decided to LIVE. Not just exist, but really live. 

Everyone dies. To be born is to die. But we have a choice on how we spend that time. We sold our business of 30 years and retired to Florida. I have fun every day. I still think of cancer especially if some new ache or pain shows up but I live my life in honor of all the Marthas that didn't make it - all the ladies on this board who have left. They can't, but I can and I do it for them.

I like the Cheesy Queen's advice too. See a cancer counselor. They're someone safe to talk to and have other coping mechanisms.

Love,

Eldri

Yeo's picture
Yeo
Posts: 23
Joined: Nov 2019

Thank you.  I try to remember that I must always count my blessings.

Molly110
Posts: 131
Joined: Oct 2019

I agree with you, Yeo, that it is always good to count our blessings. But I think it is also important to allow ourselves to feel our feelings, so to speak, and to own that this stinks (assuming that you feel that cancer sucks : )  ). One of my best friends is a clinical social worker, and she reminds me of that all the time. One of the things that a good therapist can do for you is to help you find the balance that is right for you. Sometimes a friend can do that, too, by being present with you as you talk about your fears and hopes and uncertainties.

For me, this gets easier with the passage of time. I got my first inkling that something was wrong last July; in many ways, it's hard for me to believe it's been a year. (In other ways, it feels like it's been a decade, of course.)

 

Forherself's picture
Forherself
Posts: 421
Joined: Jan 2019

I am thinking of you and hoping you have found some help to escape your worry.   Your cancer center might have some ideas too.  It is more difficult during this lockdown time i'm sure.  Don't be afraid to come back and talk about it.  We are all here.  So many women check in every day without making a post.  

Yeo's picture
Yeo
Posts: 23
Joined: Nov 2019

Hi Forherself, I am doing better, I seem to do well for a little while, then kind of get a panic attack and have to remind myself that it serves no purpose to give into fear and that I need to just let it pass, so I am trying to accept that with this diagnosis I am going to have moments or days where fear is an issue but I know it will pass, and if it doesn't, I will get help.  Thank you for asking, the responses and suggestions from everyone really helped as I felt very alone with this issue.

Forherself's picture
Forherself
Posts: 421
Joined: Jan 2019

I could not sleep in the same place that I recovered from surgery.  I had to move to a different bed.  That is a symptom of post traumatic stress disorder, and it can occur after receiving a life threatening medical diagnosis.  It is one of the hard parts of this diagnosis, the mental anguish.   Sometimes you need more than yourself to get over that.   Could you tell your primary care person you are having a few panic attacks?  There is also help at your American Cancer Society.  Anyway,  I hope you continue to improve your outlook.

MoeKay
Posts: 289
Joined: Feb 2004

Next month it will be 21 years that I completed treatment for endometrial cancer.  I still remember the time after completing treatment as the worst psychologically.  I felt like I should have been doing something more to prevent recurrence, expecially given that I had a number of poor prognostic factors that substantially raised my risk for recurrence.  And the fact that the surgery threw me into surgical menopause which resulted in severe insomnia just added insult to injury.  With counseling, medication, exercise, support groups, and time, the situation slowly improved.  In addition to the above, my advice would be don't be too hard on yourself.  It will take as long as it takes.  Also, the coronavirus doesn't make things any easier. 

Incidentally, I have a friend who was both hit by lightning when she was a lifeguard in her 20's and received a stage 4 endometrial cancer diagnosis over 3 years ago, so I will have to ask her how she compares the two experiences.

Be well. 

Armywife's picture
Armywife
Posts: 417
Joined: Feb 2018

I can't tell you how amazing it is to read a sentence that includes "21 years since I completed treatment."  You are so good to stay active on this board and encourage all of us that there is such a thing as the long haul! Thank you!

peg1954
Posts: 1
Joined: Oct 2018

My story is much like yours, just one year older. I was diagnosed in September 2018; surgery October 2018; chemo November 2018-April 2019. Dying was the only thing I could think of from diagnosis until mid-chemo. Then chemo was all I could think of - yuck! As time passed the thoughts of dying lessened. They still pop up every once in awhile, out of the blue. Little aches and pains, a dark spot on an x-ray (turned out it was a gas bubble Tongue Out) all produce a little tingle of fear. But I recently took an outdoor vacation with my 5 year-old granddaughter and after an exhausting, fun-filled week, I was struck with awe that I'm still here, able to hike, able to climb a bucketload of steps, and able to have such a great "girls trip." I guess my advice is to congratulate yourself on how strong you really are and how much you have overcome so far. I think the fear is pretty normal and may never leave us completely. But I'm going to keep enjoying those awestruck moments that remind me that I'm still alive. 

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