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I want my life back!!

EZLiving66's picture
EZLiving66
Posts: 1249
Joined: Oct 2015

I was going to put this on my facebook page but the vast majority of my friends would not understand.....but I know all of you will.

I have been working in the kitchen all morning - pork tenderloin in the crockpot and lemon bars in the oven. A year ago, this would have been nothing for me to do. Now, a year after my hysterectomy, chemo, a small stroke, neuropathy in my hands and feet, stomach damage and liver damage, I can barely do it. I read the recipe, read it again and again and I still do it wrong! It's like my mind doesn't work right. I dropped the measuring cup with powdered sugar in it all over my stove. I dropped the lemon AND the grater into the mixture. Then all of a sudden, without warning, my bowels emptied - right in my kitchen! I ALWAYS wear some kind of pad or adult diaper but it's still a huge mess. I was shaking so bad after I cleaned it up, I had to sit down and have a good cry - not a sad little tear or two but a full out, hysterical cry. I WANT MY LIFE BACK!!! MY REAL LIFE!!!

It is one year ago this month that I found I had uterine cancer. At first I was told it was Stage I, Grade 1. After the hysterectomy, it became Stage II, Grade 3, UPSC. The chemo almost killed me and I still suffer from the side effects. I called my GPs office and they told me she's out on medical leave until mid November. I made an appointment for November 14th. I see my oncologist's PA at the end of the month but all she ever checks is for recurrence in my vagina, blood pressure and pulse. All my blood work, etc. is done by my regular doctor. I am going to call to see if my oncologist will refer to me a gastro-intestinal doctor to see if there is anything they can do about stomach. I've always had this problem - IBS with diarrhea but since chemo it is TEN times worse! My GP thinks it is made worse by stress and I know that's true. I'm sure all my cooking/baking problems caused the stress and my entire stomach and intestinal tract reacted but.....life is full of stress!! At least my REAL life is. I cannot spend the rest of my life sitting in a chair staring at the tv - I am only 64 years old!

I have a bad cold and have not been sleeping very well the last couple of nights. We are embroiled in a dispute with one of our big bank customers at work about something that happened back in 2013 and our youngest daughter broke up with her boyfriend of almost three years from where they lived in Minneapolis and has moved back home (we moved her back - two ten-hour round trips!).

Ok, I'm done with my ranting pity party! Time to pull up my big girl adult diaper and get back into the world. The thing is, I've always been the strong one in our family who holds it all together. Nobody understands I can't do it anymore except our 42 year old daughter, Kathy. Our other kids, 24 and 23, who live at home, AND my husband of 45 years all think "IT" (the cancer) is over and, of course, want things to go back to what they were. Kathy understands because she is a cancer survivor too. I have talked to my husband and the two younger kids and I know they try but things slip back into the old routine quickly. We have always had a happy, peaceful home and I loved being a wife and mother but.......I don't know how much longer I can pull this off. Kathy has even talked to them but they've told her, "She's fine; she acts fine." Kathy said I told them you are NOT fine...you're still sick. They just seem to shrug it off like it's no big deal.

Thank you, my friends for listening. I feel better already. I love you all and don't know what I would do without all of you!

Love,

Eldri

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1416
Joined: Jun 2015

Eldri, I'm glad you reached out to us! You know you have support here for sure.

I'm soooo sorry you are still having to deal with hideous side effects from your treatment. I think it is a good idea to see a gastrointerologist. There has to be something that can help with your IBS. Also, I think you are pushing yourself too hard. I know you have the business to take care of and it sure seems like you need to hire someone and stop working for a while! All of that stress on top of the kids stress just may be too much for you right now. You really never gave yourself time to heal. So many demands on you - some self imposed possibly? Can you do a time out? Take a month where all you do is focus on getting better. To do that, you have to give yourself permission to relax. I truly believe that is why I have gotten myself in a much better place now. And, it takes practice to allow yourself that time. That doesn't mean you have to sit down and do nothing all day long. It just means you do things that feed your soul and make you feel relaxed. It means you do things at the pace where you can find a sense of accomplishment and enjoyment from doing it without putting time pressure on yourself to finish it. It means you allow yourself to be "selfish".  If you can do this, I truly believe you will find yourself again. And, while you may not get to the same level as you were before cancer hit you, you will find a new normal that you may even like better or at least be happy to live with.

Take Care Eldri.

Love and Hugs,

Cindi

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

Oh, Eldri! I am so sorry to hear that you are going through all of this. You deserve your real life back. I hope and pray that your oncologist gives you a referral to the Gastro and that they can help you with your physical problems.

Maybe you, your husband and all of your children need to have a family meeting to discuss what is going on and what you need from them? If the two younger children hear it straight from you, it may sink in with them. They are adults and deserve to know what they can do to help you.

My thoughts and prayers are with you as you work through this. Kim

CheeseQueen57's picture
CheeseQueen57
Posts: 717
Joined: Feb 2016

Oh Eldri...I wish you lived down the street so I could give you a big hug.  And you sure have a way of making a even a tragic situation sound funny!!!!!

Give yourself a break!  Unfortunately, we're not the same people we were before cancer, and you suffered a lot. Even if the cancer isn't effecting you, the side effects from your treatment are still very real.   That's what your family needs to understand.  

I agree  you need to see a GI doctor, but one who is familiar with cancer treatment side effects.  I find a lot of my regular doctors don't know s#*t about cancer and treatment side effects.  Also,  you might seek out a registered dietitian that specializes in GI issues.  Often insurance will pay for nutrition counseling. 

Thanks for sharing your woes.  We truly empathize with you.  I wish we could do more than that.

MAbound
Posts: 647
Joined: Jun 2016

Oh, Eldri!

 You sure had that cry coming! The mental image of it has got me so upset. I think all of us here echo that same sentiment because mentally or physically our lives will never be what they were before.

 

 Now it’s time for a little tough love for that family of yours! They’re adults, for crying out loud!

 

 I am what is known as a mean momma raised by a mean momma who had a mean momma. What you described as your family's expectations just makes my blood boil for you! If I had a nickel for every time I heard “I hate you” while my kids were growing up my husband could have retired 20 years ago. But, you know what?  Now I hear “thank you” a lot because my kids are self-sufficient and have learned how to cope with life’s setbacks. You do no one, not yourself, not your husband, and not your kids any favors when you hurt yourself trying to live up to their desire for things to go back to the way they were for them. They need to come to terms with reality. This does not resolve as fast as they want it to so that their lives can be the same again. Step back, take care of yourself, and let them figure out the rest as you enjoy the show. They’ll be stronger for it and you’ll be prouder of them.

 

Soup52's picture
Soup52
Posts: 850
Joined: Jan 2016

Oh Eldri I'm so sorry! You vent away any time! We are all here for you. I agree about going to nutritionist and gastroenterologis. I need to do the same. My intestinal problems are the pits too and I just don't think the oncologist ,though I really like him, doesn't really understand how debilitating it all can be. Have a good cry and then get your family together and bring the daughter who really understands along to help explain that you aren't really fine. My heart goes out to you!

janaes
Posts: 667
Joined: May 2016

I definetly  echo MAbound.  You dont own them any thing. My kids are still young. 10 and 13 but when my kids try to expext things out of me.  I dont like it.  Especially when they are the ones that messed it up.   I dont do it.  I believe in kids doing what they can for them selves.  I wont be there for them when they get older and they need to know.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

You had such a hard time with the chemo and now having to deal with all of the after effects of that on top of the personal issues.  I do agree that maybe a sit-down meeting is needed to help everyone in your family understand how your capabilities are different now than they were before.  That kind of pressure is no good at any time in our lives, and certainly not now.

Hugs, dear girl.

MoeKay
Posts: 164
Joined: Feb 2004

Hi Eldri,

I'm very sorry to hear about the rough time you've been having.  I completed treatment 17 years ago, so I have a little perspective.  Since finishing treatment in 1999, I've never completely gone back to life BC (before cancer).  Things definitely get better over the years, but I think you are being way too hard on yourself expecting things to be back to the way they were before your diagnosis.  I know I didn't sleep for at least six months after my surgery, and it took me a long time to get back on track at home and work.  I still to this day have treatment-related side effects that incapacitate me for significant periods of time on an intermittent basis.  That's not to say that I don't love my AC (after cancer) life and have lots of fun, it's just to say that for many of us, our lives are never the same as they were BC. 

Given your current health issues, it sounds like you have way too much on your plate, and it's not all that good food you've been cooking!  You may want to consider putting your own physical and mental well-being first and enlisting the assistance of your family members to help you get back on track.  Do your two younger adult children know how to cook or bake?  If not, this may be a good time for them to learn.  I may be out on a limb here, but I think your children may think you're fine because you've tried very hard to convince them that you're fine.  They won't help if they don't know you need help.  Families often resist changes in the family dynamics unless they understand that the changes are inevitable. 

Hang in there, Eldri.  Better days are coming!  Good luck with getting your gastro issues resolved.  I was out of commission for most of August with a couple of back-to-back gastro issues, one definitely treatment related, and the other a mystery. 

Maureen

txtrisha55's picture
txtrisha55
Posts: 676
Joined: Apr 2011

Thanks for coming here to vent.  I know that we all understand what you are going through.  This is the best place to come and release all frustration.  Unless a person has gone through it they cannot understand.  It will take a while for you to get back to your old (new) self.  I am 5 years out and there are still things that I have problems with.  Memory is one of them.  There was apaper done and they found that even 15 years after chemo some still had the chemo brain.  Then you throw old age on top it....it does not help.  I write notes to myself all the time so that I remember the important stuff.  If I get tired I tell my family no I cannot do that today and I go to bed.  My daughter is 32, my sister 64 and my grandson is 8.  I still do most of the stuff for all of them but sometimes I do say no.  My grandson does not understand as he was only 3 when I went thorough my journey but his mom does know.  She also tells me to slow down and when I do not she calls me pig headed.  So take it easy on yourself, do not let the little things get to you and if you need a good cry then do it.  There is nothing wrong with.  Wish you all the best. trish

giggs100's picture
giggs100
Posts: 91
Joined: Oct 2015

Eldri I am so sorry to hear and wish (like CQ) that you lived closer so I could come over and give you a big hug and we could talk about what we are going through.   I don't think some of our family, unless they went through this, realize we might look fine, but are never going to be better from this.  The other day I heard my husband on the phone with one of our friends telling him "I had a small bout with cancer but I am fine now".  I am sure when I was looking at him when he said this my mouth dropped open and I said it was not a small bout but a large bout and still is. I know he realizes I went through a lot with chemo and I am still going through bouts of after chemo.  I get to dropping things all the time and want to get mad at myself and say why didn't I hold on tighter but then my mind relaxes and says it's the chemo.  There are times when I am not feeling well inside meaning something is hurting and first thoughts that come into my head is the cancer coming back. Then a couple of days later or week later I begin to feel well again.  When those pains occur I keep the aspirin bottle handy and take a couple of them to see if that relieves the pain.  I am just a under a year of finding out I have uterine cancer and thoughts of it returning are still pretty close to the surface.  As much as I stay strong that I am going to beat this it is still to fresh in my mind to totally let go of it (and do you really ever - I don't think so). There are days when I feel on top of the world and am thankful for these days and look forward to them.  I like the saying by Maureen of calling our lives as BC (before cancer) and AC (after cancer) there is truely a difference in each and everyone of our lives.

Here is hoping you can get your gastro issues resolved.

Hugs Eldri hoping you can feel them.

Jerri

 

iloverunning
Posts: 14
Joined: Jul 2016

is there a nurse navigator at your gyn onc clinic that could help navigate you through some of your concerns?  Hope you are feeling better and someone is taking care of YOU tonight!  

Double Whammy's picture
Double Whammy
Posts: 2821
Joined: Jun 2010

I'm so sorry to read about the perceived lack of support you're dealing with.  I gotta say, it's real, not just perceived.  And it just plain hurts.  The entire world (except those of us who have been through this) thinks you go in and get treatment and life goes back to normal and you're just like you used to be.  That isn't the case for everyone, and for those that it is, good for them!  Frankly, I think many act like everything is fine because family and friends do not want to hear about it anymore.  For them, the crisis is over and no matter how you feel, they simply don't believe it.  So come here, we're here and we get it. Try to learn to say no with no further explanation.  You are not your former self.  Some day you might be, but it doesn't sound like you're there yet.

About the bowel thing .... I did not have to have pelvic radiation, but a good friend did and she experiences these "events" rather regularly I'm afraid.  And she had the radiation 10 years ago.  Arghh.... I do have irritable bowel syndrome and have for year had these "events".  It's just never safe and just when I've decided it is, it isn't.  Ageing, coupled with having had children and finally having a hysterectomy, causes our muscle tone (hence control) to be effected.  I sort of now know what foods are often culprits and I even did physical therapy a year ago.  These things helped but did not totally cure things.  Chemotherapy and (in your case) radiation plays absolute havoc on the GI track.  I feel your pain.  It doesn't help that I believe this is more common than we know because it happens to us!  Do visit a GI doc.  You never know.  I actually saw a urogynecologist recently.  She recommends this website:  http://www.voicesforpfd.org/ as pelvic floor issues also include bowel issues. 

Hugs, Suzanne who feels your pain.

 

rcdeman
Posts: 251
Joined: Aug 2016

Hang in there, Eldri!

On one hand, I can understand why the rest of your family is putting pressure on trying to make things go back to normal. I can definitely sympathize with them. No one likes change. See, I wish my mom wasn't sick and that we could go back to how things were before. We were happy and carefree and didn't have to worry about her health and our health. But now that she's diagnosed with something serious, I understand and know that things can't ever be the same. I think it takes a while to sink it, and I'm still half in denial sometimes. She's always been the strong one in my family and she still is, and you see, it seems I've relied on her too much. Now that she's not feeling well, I want her to go back to normal, but at the same, I know things can't just go back to what it was. It's a dichotomy, unfortunately.

I think what you need to do is slow down and gather all your family together and explain to them that things just can't go back to what it was. Tell it to them straight and use the support of your daughter, Kathy, to back you up. I think they'll eventually get it and understand.

Best to you, and hope you feel better,
Rebecca

Red Corvette
Posts: 104
Joined: Jan 2016

Even the best warriors like you have bad days every so often. Sorry you had a particulary bad one.

Try to hang in there because tomorrow will hopefully be a better one.

We love you.

Red

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

Dear Eldri,

You were strong for me when I did not want to talk and elaborate on all the negative jazz. But your openness about "the negative jazz" helps others, and I thank you for it.

Family and friends don't understand -- how can they? (And sympathy isn't exactly what we want - we might just want a better-informed expectation level or a true appreciation for the new cost of simply functioning.) Medical care providers have their boxes of procedures and fixes, but have nothing for you if those don't bring a good result or seem to apply. More importantly, YOU want to be who you have been, but are stuck with a different, messed-up body. You are powering through, but you are not always able to do so.

It's very isolating. Other people's suggestions are good and right, and I can't add anything to that. But I can commiserate!

-j

 

SettledSue's picture
SettledSue
Posts: 55
Joined: May 2012

I agree with everyone else that you should see a GI doctor. If you can get improvement in that one area of your life it might help make dealing with the other things easier. Good luck to you. Keep us posted.

Kathy G.'s picture
Kathy G.
Posts: 191
Joined: Dec 2012

Sorry you are going thru this. Although I don't visit or post often I have read alot of your journey! I got off easy with the stage 1, grade a diagnosis so it is hard to read what my 'sisters' have to go through! I don't feel like I can be of much help or support.However, I have never lost the fear of cancer coming back and being in the shoes many of you walk in everyday, and I wonder if I'd be as strong.You have EVERY reason to rant and be upset! Chemo DID kill my beloved father in law...I have seen the devastating effects close up and know the after effects can be lifelong. Another crappy part of the struggle.

I hope you are able to get some relief from the previous medical issues made worse by your cancer treatments. My husband was wonderfully supportive after my diagnosis and hysterectomy, but didn't understand why I wasn't carrying laundry up & down our basement steps or doing the grocery shopping for several months. I was just too damned tired, and that was just from surgery!

So kick, scream yell & cry, but also come here to vent. It is truly a group of wonderful & supportive ladies!

EZLiving66's picture
EZLiving66
Posts: 1249
Joined: Oct 2015

Thank you all for your care and concern!!!  I love you guys!  I tried to talk to my husband this weekend but when I bring up the subject, I can see the fear in his eyes.  He says I should be positive and act like it's not going to come back.  But he also said I need to let him know when the stress is too much for me at work or home and he will try to help me.  That made me feel better.  Our 45th wedding anniversary is on the 25th and we've been together almost 48 years - it's hard to remember life without each other so I can understand his fear.  

I've had a bad cold and now it's gone into my chest so I wasn't feeling the best this weekend.  We were sitting outside on our deck when I stood up, holding my little Spunky dog, and fell sideways.  Luckily, the electrical meter was there because I kind of held on to it but I twisted my shoulder and pulled something in my right side.  I see my massage therapist/acupressurist tomorrow so I'm sure she can do something.  But, that kind of thing makes me feel so vulnerable!  I've been through PT for balance and it's helped but I still am so "tippy."

This whole cancer "journey" sure isn't for wimps!!  But for the most part, I have a wonderful life and I've tried to live it with no regrets.  I've always lived with the philosophy "It is what it is."  If you can do something, great, do it.  But if you can't; let it go.  As I sit here in my family room at home with the sun shining, I can see my flowers, our woods, our fields, our pond, some wild turkeys strutting around and my little Maltese, Spunky, sitting next to me, I KNOW I am blessed.

This is my new reality whether I like it or not and I am determined to make the best of it.

Love you all!!!

Eldri

MoeKay
Posts: 164
Joined: Feb 2004

Hi Eldri,

It looks like you and your husbnand got married the Saturday after we did; our 45th anniversary is September 18th!  Where did all those years since 1971 go?  Wishing you a very happy, healthy anniversary and many, many more!

Maureen

EZLiving66's picture
EZLiving66
Posts: 1249
Joined: Oct 2015

Maureen,  we were going to get married on the 18th, but my mother in law had her heart set on this particular reception hall and it wasn't available for the 18th....we switched the date.   I look at the wedding pictures and wonder the same thing  -  where did those years to? 

Love,  

Eldri 

MAbound
Posts: 647
Joined: Jun 2016

You are special to us all, Eldri, so feel free to vent anytime! As you can see from all of the responses, you freed a lot of us to vent right along with you! This is a safe place to do that when our families don't want/can't handle hearing it from us. They're coping right along with us and I guess our needs and theirs don't always mesh.

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

Im so sorry you are going thru so much! I agree with what others have said, you need to step back from trying to make everything just like it was BC. Give yourself permission to do less, put yourself first. I'm glad your husband is able to empathize and you need to acknowledge to him that you are not, and may never be, your old self. Don't feel obligated to do everything you did BC! Surgery, chemo, radiation do a number on all of us. They especially seem to aggravate  pre existing problems.

It's been more than two years since I completed treatment and I sometimes feel like cancer, and the treatment for it, have aged me a good 10 years. I'm often dizzy, my balance is awful, my restless leg syndrome has gotten much worse and my memory, which was never great, has gotten worse. And, yes, I still sometimes feel the foggy effect of chemo brain!  

Eldri, let your children know that while you are done with cancer you are still recovering from the truly awful reactions you had to treatment. You are not your old self and you may need to remind them that you could use their help and support and most of all, their recognition that you have been through an ordeal and need their support to recover both physically and emotionally! Lots of love!

Diya
Posts: 93
Joined: Apr 2015

Dear eldri,

I was so sad when i read your post. I do hope you get your real life back soon. One advice i can give you is if you can see a naturopath and get gastrointestinal tests done for ibs. Suprisingly natural herbs are quite effective in fixing these issues. My mum suffers from ibs. Gastro specialists did not help. But a naturopath was very helpful in getting some of the issues sorted before chemo started. Good luck and i hope to see a post from you soon about a successful baking experience ☺

 

Sending you love and hugs... diya 

EZLiving66's picture
EZLiving66
Posts: 1249
Joined: Oct 2015

I saw my acupressurist today.  I told her about all the stress I've been under so at the end of our session, she worked with me, teaching me some breathing exercises and visualizations to do when I feel stressed.  Then she took this big feather (I'm not kidding) and kind of shook it over me while I was doing the breathing.  I'll have to ask her next time what she was doing.  I'm going to see her every two weeks for awhile instead of every three weeks.  Every time I go, my neuropathy seems to get better - especially my fingers.  She said to use the relaxation techniques when I start to feel my stomach going into knots.  I'd like to ask her more questions, but it's hard to chat when she's putting pressure on my chin, my upper lip, my eyebrows - I KNOW it sounds weird but it seems to be working.  When I leave there I can walk upright whereas most of the time I'm kind of hunched over and off-balance.

I love acupressure day!!!

Love,

Eldri

rcdeman
Posts: 251
Joined: Aug 2016

If it's effective, then it sounds like it's something worth pursuing! I am already looking for acunpuncturists who can work with my mom if she happens to need the relief.

Best to you Eldri!
Rebecca

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I am so glad that you are finding something that gives you some relief.  Sound interesting.  Lou Ann 

brissance's picture
brissance
Posts: 192
Joined: May 2016

My dear friend, this is just not fair.  I hurt for and with you. I am so excited that you are getting some relief.  I hope it gets better and better.  

I noticed you mentioned when you tried to talk to your husband you see fear.  Eldri he loves you so much he doing the pretty typical family member thing, if I don't acknowledge the elephant he isn't there.  I am glad you talked to him so at least you know he is trying to support you.

I know you will keep up the fight and get back that "new normal" life.  You know and expect it is a difficult road.  Let us be here for your support if you need us.  

And... what kind of feather was that anyway???  :)

EZLiving66's picture
EZLiving66
Posts: 1249
Joined: Oct 2015

It was this big kind of plummey black feather.  I don't know if it worked or not but I know I feel better when I see her.   I bought a used exercise bike on Friday.   It's really nice and has kind of a tractor seat to fit my big caboose.  Everything I went to physical therapy and road their exercise bike my neuropathy was better that night so.... maybe that will help too!!   Sure can't hurt. 

Love, 

Eldri 

giggs100's picture
giggs100
Posts: 91
Joined: Oct 2015

Eldri I love my exercise bike for neuropathy.  I find this helps me more then my treadmill.   I find if I use it for an hour a day it not only helps me with the neuropathy but I have lost some weight with it also.  Hope you can find some relief for your neuropathy too.

Jerri

 

LindyLu
Posts: 72
Joined: Sep 2016

So sorry to hear, Eldri, but I applaud you for sharing your bad day with us.  My heart goes out to you and after all you've been through.  Hopefully you get the needed support from your "sisters" here.  You also gave me food for thought...what to expect (or not) from family and friends.  BTW, my hubby and I will be having our 46th anniversary in November.  I totally get that, even though he's very supportive and will "do" anything for me, the emotional part is unnerving to him.  I can cry at any moment, for no apparent reason even to me, and he just doesn't know what to do.  Nice to know I'm not alone in this.  

Here's to better days ahead for you, and it sounds like you live in a beautiful spot!  Hugs and Sunshine, LindyLu

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