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SoCalGal 03-07-2015 10:54 AM

cancer is killing my spirit
 
I've been fighting depression for about a year or so. I don't take anti-'d's, historically they haven't worked for me. Instead, I force myself to forge ahead, stay focused on gratitude - keep my eye and my energy on what I DO HAVE, etc. I dance 2-3 nights a week, out for the evening, it is my escape into the world of social dancing. No one knows my history, I am just another person on the dance floor. It has been my savior, this space of happy music, body in motion.

My last few scans have not been great. BUT compared to others with stage 4 (which is how my doc views me, compared to others), I am doing well. Meanwhile, I feel more and more anxious, certain that this could be my last "healthy" year, meaning good quality of life...and now even that is questionable with my neck nerve problem.

I have been suffering with nerve pain from cervical c5-6. VERY DEBILITATING PAIN. Unrelated to cancer, or anything surgically fixable, this narrowing in my neck creates horrible nerve pain which remits in my arm/elbow and shoulder blade.

I'm supposed to have another epidural in just a couple of hours. Also very anxious about that, even though I had one a week ago, and have had then from time to time, it's like I just can't handle things any more - it's all too much for me to take. I have no strength - I am so tired.

I was supposed to add back in Avastin next week but found out that they have to hold it for two weeks following an epidural. Not even sure that it will work again on my lung mets, but wanted to at least try.

I am so tired of fighting everyday. I am beyond weary of this disease. It's been 8 years of stage four shit, but all together it's 19 years since I was first diagnosed. I am down, and tired and no one seems to understand this, least of all my (young adult) kids. It is so difficult to keep trying to re-create a life for myself.

I am just so weary of fighting this disease. I feel that, cell by cell, cancer is killing my spirit.

Donna H 03-07-2015 11:57 AM

Re: cancer is killing my spirit
 
OMG, SoCalGal my heart breaks for you. I am close to my one year DX (this Friday) so I have no real idea what you have been going thru. I am sure you are sick of hearing "Be strong" or "Stay positive". People who have not gone thru this journey have no idea what it does to a person - both physically and mentally. I say laugh when you can and cry when you need to. Please know that everyone on this site is thinking good thoughts for you and sending you strength and encouragement. You are stronger than you realize. All my best -

Ceesun 03-07-2015 01:50 PM

Re: cancer is killing my spirit
 
Flori, Please hold on and hang in there. You have so much spunk and spirit...I just love that. I know the road has been long and I guess as we age ( I suspect I am older than you...darn!) other non related to cancer issues set in to deal with, for me its the knee, but that is even harder when cancer is in the forefront of our lives. Give yourself a little time to be down and then try to kick it in gear. If you need some meds to take the edge off, go for it...you deserve to take care of mental/emotional self, too. I have been stage four for almost nine years now and especially today after the Adriana news I am in a total funk. But when I look around at my friends, even, there are people worse off dealing with illness. You may just be one of those outliers...and continue to do well! Best wishes always SoCal Gal! Keep those dancing shoes on and as you say...cuck fancer!! Hugs, Cathy aka Cee to Adriana and Ceese to Pink Girl....

jaykay 03-07-2015 02:05 PM

Re: cancer is killing my spirit
 
Oh, Flori - I don't know what to say to you other than you are a shining light in this site of wonderfully strong women.

Re: your neck. Have you tried acupuncture? Worked better for my back than epidurals.

Thinking of you

Janis

tricia keegan 03-07-2015 02:55 PM

Re: cancer is killing my spirit
 
Flori I'm not surprised you feel down and this is normal I think so don't feel bad, go with it and do something nice for you and know that tomorrow is another day and you'll be back fighting again although I'm sorry you have to. ((((hugs))))

europa 03-07-2015 03:32 PM

Re: cancer is killing my spirit
 
Flori, I am so sorry this is becoming a struggle for you. Have you ever considered therapy? It worked well for me and still works well for me. I'm going through something right now related to Cancer and it has been too much to handle on my own, so I see a therapist once every two weeks and it really has helped

DianaMK 03-07-2015 06:18 PM

Re: cancer is killing my spirit
 
I'm sorry you are going thru this. You are an inspiration to all of us. You have gone thru so much. Living with cancer is bad enough but to have nerve pain too completely sucks. I pray you get some relief. Hang in there!

Pamelamary 03-07-2015 08:29 PM

Re: cancer is killing my spirit
 
Flori, so sorry to hear you are feeling down - we are all dancing beside you!
Best wishes.... Pam

StephN 03-07-2015 10:32 PM

Re: cancer is killing my spirit
 
SoCalGal -
You are a wonder! I never know when my last healthy year will come and go either. I wish I had the time and energy to dance as much as you do. I do find that even certain music can soothe me when I am feeling on the ragged edge.
Movement creates energy. Stop and we drop.

Very sorry to hear about your neck pain. Pain can be so hard to deal with if it is ongoing and nothing in sight to help it. Keep looking for a way to get some relief. I am having a problem with advancing neuropathy of my feet which is precluding me from even long walks with my hubby. I went to a specialist and I am going to try a different class of drug that is less expensive.

Feel free to vent all you need to. We hear you and hug you!

sassy 03-07-2015 10:37 PM

Re: cancer is killing my spirit
 
Flori,

Please know that even though your children and probably lots of others around you don't understand the weight of this disease (how can those who haven't walked this path understand?), WE understand and you are not alone.

Maybe antidepressants might be worth a try again. They have helped me through rough patches on more than one occasion. Perhaps one you have not tried before would be effective.

You are one of the strongest survivors I know-you kick butt.

Keep on kicking.

Holding you in my thoughts and prayers and sending positive thoughts.

waterdreamer 03-07-2015 10:49 PM

Re: cancer is killing my spirit
 
Have you thought about getting a portable far infrared sauna, it will help detox your body, and weaken the cancer. It should also relieve your pain. I just purchased the Clearlight Curve - I will let you know how it goes. It has virtually no EMF's and I have always found heat to be helpful for bone pain. I am not doing any chemo. I will do radiation if I get anymore brain mets, but I am juicing, supplementing and eating healthy. Hang in there, you have come this far - what do you want for yourself? What are your dreams? Dreams are so important, dare to dream.

Jackie07 03-07-2015 11:13 PM

Re: cancer is killing my spirit
 
I hear you, Flori.

I've been having neck issues as well. They are caused by the stupid brain tumors (Central Neurocytomas - unrelated to BC) near the thalamus. I have to be careful when I bend or turn my neck ... Those doctors never informed me about the little ones near the Thalamus (We had GKRS the three bigger ones in the vast space above it in 2001.)

No, I haven't been able to dance for ages ... (Nor singing - it was 15 years ago when I last sang in the choir; 24 years ago when I did a solo part in one of the church concerts.)

But I do enjoy chatting on Facebook with my family/friends and online communicating with my fellow cancer fighters.

Gripe whenever you feel like it. We understand. We are on the same boat.

yanyan 03-07-2015 11:51 PM

Re: cancer is killing my spirit
 
I too hear you Flori. Lucky enough that I'm still here after 4 years and I know no days has been easy dealing with recurrence. I feel your frustration, depression anger and moments of peace and joy when we are in remission even if just one day - one day when we don't have to think of this. Fern has given some good advice on healthy diet and lifestyle which we all can benefit from. And I like you going out to dance- do something that makes you happy! Lots of hugs to you !!

michka 03-08-2015 02:08 AM

Re: cancer is killing my spirit
 
Dear Flori, I understand how you feel. You certainly didn't need this neck pain. Pain knocks anybody down. I hope you can find a solution because it is so important that you continue to dance. Hugs.

rhondalea 03-08-2015 07:01 AM

Re: cancer is killing my spirit
 
I'm so sorry to hear about the issues you're experiencing, Flori. It sounds as if it's more the nerve pain than the cancer that's killing your spirit. Nothing will make a person lose hope faster than unrelenting pain.

I have never found a benefit from antidepressants (although I've only tried two that were prescribed temporarily to relieve hypothyroid-induced depression until my blood levels came up), but there are other options. You might want to ask about Deplin. For some, it can be amazing. It is a medical food, and it does not work the same way as antidepressants do. Another option might be a mild stimulant at a low dose, because that will address the neurotransmitter (norepinephrine) that SSRIs don't touch.

But the pain is what needs to be addressed, so it might be best to find a doctor who specializes in pain mitigation. This link is to the US page of the World Institute of Pain, but you can access all their information from links at the top of the page. I don't see anything local to you, but if you contact them, they should be able to help you find a local practitioner or center:

http://www.worldinstituteofpain.org/...ction-USA.html

And again, I'm just so sorry that you're having to deal with this, but I have hope that if you are able to control the nerve pain, you will have reason to be more optimistic.

rl

SoCalGal 03-08-2015 10:23 AM

Re: cancer is killing my spirit
 
Rhondalea, you're right -the pain IS messing me up, more than the cancer in the sense that the cancer is a silent killer right now.

I got the second epidural yesterday, he actually said that there are bony spurs that could be helped with surgery if it comes to that. Although he was very optimistic that the epidural will calm the nerve and I'll have a good result. He is an anesthesiologist, did the procedure a different way than the doc last week, and went into another area as well c5-6 and c6,7. At least I have a plan to be followed so I am feeling less like disposable garbage. This guy is a gem, so finding a good doctor (rather than the head of cedars pain management clinic, who is perhaps a good dr but that office is impossible, they are bitchy and it takes two days to get a callback) also helped with my high anxiety.

Im going to see a shrink to support me for awhile - even though I hate to spend the money on that, for now I don't thnk I have a choice.

I felt so much better just from posting yesterday.

Reading all your words does give me such valuable support, plus ideas to consider.

As much as I hate to add in more drugs to my daily swallow, I am going to revisit options with my doc if only for the short term.

Meanwhile as a friend suggested, aleve can be good for a few days since I am on Avastin hold for two more weeks. (Although for some, naproxen can be a depressant). I've not been in this dark of a depression, my sadness is usually more grief related, comes and goes, something I live with. And my method of coping usually is very action oriented. I am simply exhausted and overwhelmed, isolated and frightened. These feelings are so dark, the stay in bed, I-am-so-tired-kind. Big departure from my usual "girl with a plan A,B and often plan C". A girl who created and facilitates art expression programs to help others on their cancer journey. Maybe it's my time to float in darkness for awhile, maybe I am just sick of this journey or maybe this will allow me to better understand others in this place. Who knows?

Thank you all for your kindness and support, including those who reached out via PM. I AM FILLED WITH GRATITUDE FROM YOUR SUPPORT. (And thank you to the Druthers for creating and continuing this board).

"Sticks and stones can break your bones but words cannot harm you" is NOT true. WORDS ARE SO POWERFUL. Thank you all for yours.

BonnieR 03-08-2015 11:41 AM

Re: cancer is killing my spirit
 
Our dear Flori! It sounds as though you are getting back on top of things and feeling more hopeful. Having a respite from pain is everything! I'm dealing with spine and hip pain and finally got relief in recent days via PT. I cannot believe what a difference it made in my QOL and outlook
I like Aleve a lot too!
I think having someone to talk to is a wonderful thing and can be real support. Perhaps help you find a suitable antidepressant
Please try to remember that this is transient and you'll find the right combination
As the saying goes, when you're going thru hell, keep going
Keep the faith. You, of all people, do that on a daily basis

Lani 03-08-2015 02:05 PM

Re: cancer is killing my spirit
 
be a bit careful with assuming it is ok to take aleve if you are off avastin.

THe effect NSAIDs has on platelets which promotes bleeding is prolonged (which is why they ask one to d/c nsaids early prior to surgery)

They may want you off them 7-10 days before surgery, or they may not want you to risk additional chance of bleeding at all

As always, best to ask your doctor

Here are a link about a non medication treatment for depression--will never get a clinical trial on this as there is no $$$$ in it:

Chronotherapy for Depression: Rapid, Large, Stable Effect
www.medscape.com/viewarticle/840191
Medscape
Feb 23, 2015 - A chronotherapeutic intervention combining sleep deprivation (wake therapy), bright-light therapy, and sleep scheduling may have lasting ...

BonnieR 03-08-2015 02:35 PM

Re: cancer is killing my spirit
 
Lani, thanks for pointing that out about Aleve. I'm grateful for the really knowledgable like you who share with us!
Keep the faith

caya 03-08-2015 05:07 PM

Re: cancer is killing my spirit
 
Sorry to read about your pains issues and depression too Flori girl! You are only human, of course this el crappo disease is going to take its toll on you, especially after 19 frigging years (and 8 of them at stage 4).

I also hope you consider revisiting taking some kind of antidepressant, something might work this time. I hope so, for your sake.

Bitch and cry and moan as much as you want - that's what we are here for. It ain't called the HER2 Support Group for nothing...

xoxo

all the best
caya


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