How do you keep from feeling your life's been ruined?

London-Virginia

Hello there. I am single too and have some experience of some of the difficulties you have had. It is pretty hard when much of our experience of this ghastly business has been dealt with alone.

I thought you might like to know that some of us find that the neuropathy lessens, and in my case just suddenly stopped. Completely. How odd that felt. Lots of people don't get it at all.

I take Tamoxifen just before I go to bed and have found that worked better for me than in the morning.

Good luck friend

paloverde

Hi everyone,

I'm the OP. I stopped visiting BCO around the time I finished TX and got the NED green light, so I haven't seen the last 2 years of posts on this thread. Good stuff and I wonder how you all are doing now.

I was on vacation 3 weeks ago with my family and discovered a suspicious lump on my neck, about 3 inches to the right of the midline and just above the collarbone. I had a routine appointment with my onco scheduled for 3 days after I got back - I had just graduated from the 4-month frequency to the 6-month frequency. Was pronounced NED in Sept 2014 after ACT chemo and 28 rad treatments.

A neck & chest CT scan was ordered, and I got the results back 2 days ago. Long story short, the lump on my neck is an enlarged lymph node, they saw some midline thoracic lymph nodes that looked questionable, AND a 5cm x 3cm mass in the liver along with "numerous" others (unsure of their size relative to the largest one). They will biopsy from the liver, not the neck - I will be going to radiology for that this morning, since it will be CT guided. In addition to the regular ER/PR and HER2- pathology tests, they will send out for a tumor genomic panel called FoundationOne.

Well, sh*t. To complete the information gathering, on Tuesday I will have an abdominal & pelvic CT scan and a full body bone scan, just like at Christmas 2013 when my pathology from the BMX and ALND showed 11 nodes positive out of 16 removed. Then the "strategy session" with the onco a week from today, pulling together all the test results and discussing a plan.

The good news: 1) my blood work from 2 days ago came back completely normal, including liver function; 2) I wasn't told of any lung masses showing up in the chest CT scan, they told me 2 weeks ago my lungs sounded clear, and I have no shortness of breath; 3) nothing leaped out of the neck & chest CT indicating obvious bone mets, and I don't have constipation or other symptoms you'd expect if I were dumping calcium from bone breakdown; 4) no headaches, tremors, trouble with coordination, weird cognitive symptoms (except the usual occasional chemo brain trouble grasping for the right word), or anything else that would signal brain mets; and 5) I feel generally okay except that my appetite is increased and the big lymph node is painful.

I'm continuing with my tamoxifen that I've been on for 2 years (I also had ooph 2 years ago) and my mood stabilizer for bipolar, same as I've been taking for over 10 years. My diet's not terrible but not fantastic - I just went back to Weight Watchers after a 6-month hiatus, need to lose 20-25 pounds. I get some exercise (walking) and thinking of going back to weight training as well. I had a bout of depression the first half of this year, largely situational, but it's been lifting over the last month.

I have to acknowledge that I'm surprised by the timing, but not shocked overall. The original tumor, though not large, had been Grade 3 and 30% Ki-67. My BS told me some tumors are growers and some are spreaders, and I had a spreader. So between that and the extensive lymph node involvement, I was pretty sure I'd go stage IV at some point. But since in 2014 my onco estimated only a 15% chance of distant recurrence over lifetime, I thought I'd be in remission for 5 years, maybe 10, certainly longer than 2. I now think her number was too optimistic, though I have high confidence in her in general. My husband's really disappointed in her, though, because her prognosis created a very different expectation.

Thanks for listening. I'll update after Sept 1. A blessed day to all.

Beatmon

Dear paloverde: so hoping all the good points you listed are keeping off of the recurrence list. brenda E

Linda111

Hi. First time blogging here. I may not be the "typical" breast cancer patient as I decided not to do conventional treatments. I was diagnosed with stage 1-2 HERT+ a year ago. I decided to go on the evil drug Letrozole to shrink it. It shrunk to 5cm, at that point surgery was decided upon which I had 4 months ago. I said no to chemo, to radiation and no nodes removed. My plan of attack is lots of supplements and taking a holistic approach. I know that there are no guarantees with cancer, I just had to do what I felt was right for me, good or bad. Like all "survivors", I anguish every day about my future, cry every day, I am having a hard time coping with this damn drug which my oncologists insists that I take for a least five years. No way. I will not last that long. It is destroying my quality of life.
So, that is where I am. It feels like I am in hell everyday.
How to cope? That is what I am trying to find out.

Linda111

Hi. First day here, just signed up.
As I said no to all conventional treatments, I have lengthly researched holistic options. I take many supplements, drink Noni juice daily, use Frankincense essential oil and will start using geranium and rosemary oils as well. My list grows. Will this help? For me, it is my option. Dealing with the fact that a tumor formed in the first place and gd why, hurts every single day. The drug Letrozole hurts me every day. I despise it and vow that I will quit it soon, even against my onc. suggestion.
But for you- please look into supplements, yes, do a lot of research, one is TTAC- tons of info there.
About your spouse- will counseling help? We all need any support people we can get! Regardless of his negative crap, you be true to yourself and make sure that you are eating the best foods that you can get- organic preferably. Do I eat right all of the time? Nope. I allow myself some leeway. But for the most part I do. We all get cancer because our bodies are sick. There are ways to help heal the body. That is my goal.
I cry every day, but at least, after reading these stories, I know that I am not alone.

Frill

When I first got this DX, it was almost a joke, it was this weird screwed up thing that was happening next that I would sail through, tough out, and be fine. I've been in an 18 wheeler wreck where I almost died, was in a coma and had a traumatic brain injury that left with with about half my previous IQ. So I decided the best therapy was to suck it up, go back to school and then to law school. I finished law school, was working, and had two brain aneurysms. Now this.

But this really sucks. And I'm at the point of waving the white flag. I can't take the LE, the constant pain (and I've done constant pain), the body image destruction, the roller coaster emotions....you name it. I mean, I'm at a year, and I haven't even started rads yet. This literally will never end. I totally feel the walking out in the woods in the middle of winter thing. I'm ready.

With the brain injury, I read all the self help healing books, did all my affirmations, walked 20 minutes a day, lost weight. Now....my attitude, Louise Hay would be ashamed. I'm ashamed.

TBH, I feel like DBH is letting the house fall apart around us with his own stuff. If I try to help get things moving, I'm met with resistance. It's like I'm literally stuck in a pool of mire. Normally, I'm a super motivated person with multiple planners, projects always moving, working, managing, improving....and now I have a pond in the backyard (a pool).

I get treatment in another town, and at that house, it's messy, boxes everywhere....so there is literally no peaceful sanctuary for me anywhere. The one I created, every time I come home it takes me a week of work to get it back. Then it's time to leave again. I just got through cleaning carpets. Next up, sweeping and mopping. By that time dinner. In between, work. And in between each second, the wish that it would all go away. Today I went back to sleep until 2, so I'm behind schedule.

I read back over this and I feel like such a whiner. But the joy in my life is gone. I wish I could run away.

NineTwelve

Aw, Frill. I feel for you. I am one of those people who feels responsible for everything around me. My natural instinct is to fix it NOW, and if someone else has different priorities, I don't even let them help. I really had to fight that when my world fell apart. I had to learn how to accept help. I had to learn not to do everything I did before, because cancer takes up a big chunk of my strength, time and energy. And because I have to keep my job because I need the good insurance, and I don't have a spouse to add me to theirs.

Not saying you have to give up everything forever, but give yourself a break, and take time to think about what you want to focus on first.

A social worker explained to me one day: "You have an overwhelming number of problems right now. Put them in boxes (in your mind) and put them in the closet. Do NOT pull out all the boxes at once. Just take down one at a time."

I tried her method and got some relief from the constant stress.

I found joy again when I went back to my acupuncturist. Cleared out the heavy stuffed feeling around my heart (packed with old memories and heartbreaks) and made me feel light inside. I am also reading about epigenetics (the theory that we can program our genes in a meditative state). It's strange, but exciting.

Here's a youtube video about the book I'm currently reading:

https://www.youtube.com/watch?v=BmFkfnWHnVw&list=PLLgkGPhR9174N1h8XrSnFQRmBaGi6B30k

I bought the CD with the meditations so I could just hit play and bliss out. (I don't need any extra work right now.)

Wishing you health and happiness.

farmerlucy

aww Frill - It sucks. You've sure had plenty obstacles in your life and now this.

It is so tough when joy is hiding. I hear you. I agree. Be good to yourself. Be sure to put yourself at the head of the line.

I do suspect joy is merely hiding for now. How long will it last? No one can say. Put one foot in front of the other for now.

Hugs to you sister.

Lovinggrouches

Frill, I can partially understand. I fight depression every day. I was never a depressed person before cancer. Everyone always told me I was TOO happy, now I'm on antidepressant and sleeping medicine. Had 3 surgeries this year, and was sick of being in pain. I still fight feeling down daily. Some days, my DH can get me out of my funk, my mom will hug me and I feel better at times, other days I just go to bed early and try again the next day. I've learned that I don't give a care most of the time about the house looking great. I don't obsess about cleaning like I used to. Sometimes it's ok to let some stuff go. Hugs!

Manc

Hi everyone I realise this is an old thread but it sums up in the title exactly how I feel. As a Grade 3 with nodes involved I suppose I'm high risk of recurrence and I struggle all day with fear. I've tried some telephone counselling plus low dose antidepressant which I've stopped now but I still struggle. I am a born worrier but this is a big one ! I've had all the treatment and can't do much more. The problem now is eighteen months on I miss and want back my old life. I'm blessed with four children aged 15 to 27 and a, Granddaughter plus lovely hubby. I was so so happy before and now my life is sadness and fear. I get on with the day go out etc but it's still there. I Google constantly which my counsellor said was driven by fear trying to find reassurance that I'd be ok.

Anyone had similar and overcome it I don't want a ruined life at age 49 whatever happens I want to be happy again. Many thanks.

Denise-G

Manc - it is a LONG process for most women whose fears about recurrence never goes away, but you find out ways to handle it. My sister and I call it "being on the ledge" when the fear just takes over. I'm almost 7 years out and still have them all the time. But I better know how to handle it so it doesn't get so crazy in my mind.

And you feel like almost all of us feel - you just want your old life back. I sought counseling when I was 18 months out from treatment from a former pastor of mine who was a cancer survivor who was not expected to live, but did. He immediately knew where I was in the cancer survivor process when I told him "I just want my old life back." He was very frank and told me my old life will never come back, and I needed to Adapt and Adjust. Those two simple words made a HUGE difference to me.

I started doing things differently and tried to accept where I was. It helped me tremendously. And remember, it is a long and painful process, but you will get there!

Meow13

It is very easy to fall into the pit. I was never sick in my life now I have to deal with cancer. I am upset we don't have better treatment. I wish I could have beamed myself into the future where the cure might be simple. But we can't eventually our minds say ok, move on.

Meow13

It is very easy to fall into the pit. I was never sick in my life now I have to deal with cancer. I am upset we don't have better treatment. I wish I could have beamed myself into the future where the cure might be simple. But we can't eventually our minds say ok, move on.