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Staring the end in the face and living now 
Started by passirose
10 Jul 2012, 1:14 AM

Hi,

I need to share something and also need to vent some deep emotions.  As you know it is hard to find someone who will listen and understand.

I have difficulties to focus on my life and not think about suffering and dying soon. This is something that happen often, let me give an example.  Like this last time at the grocery, I am there, and I don’t want to be there, I’m just too tired (and in the need to let go another good cry), I want to be in my bed and sleep and forget about all this and then wake up and feel all right.  I try to push myself and to think positive, positive, positive: “I’m here, walking, breathing... how come I cannot enjoy these simple moments?” it depress me more.

I look around me and see ordinary people doing their regular grocery.  This reality is not mine, I feel like I’m in a horror movie, being in a car at high speed, without a driver, knowing I will crash in any moments... but wait, it is worse than that – I am trap in a body, that is so sick and broken that it is dying... with me inside!.

I am now 4 months from the first chemo  treatment for the recurrence of my inflammatory breast cancer; it is now in my lungs, bones, pelvis and femur.  I was treated initially in 2009 and I knew it was an aggressive cancer with high risk of recurrence and I was dealing well with this.  I just don’t understand how come I cannot stop having those crises where I feel so sad and miserable. I use to be a pleasant and smiley person and despite I can have good days, they are becoming rare.

I am consulting with a onco- psychologist every weeks, but I cannot wait 3 or 6 months of therapy to recover my life, I need those months!  I have an emergency to live while I am still able and not too much in pain.

I am wondering how do you cope with the reality of facing death in the daily routine, I so wish I will be resilient soon.  Thank you for your listening and feel free to give you input.

(As I am a french speaking, I hope you wont mind the writing mistakes...)

Friendly,

Suzanne

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Reply by Cath1
10 Jul 2012, 2:26 AM

Dear Suzanne (Passirose):

Your story and your appeal for support is heard. I am listening as I am sure are many others. You must in your situation feel very alone and afraid. It is a natural feeling I think given the reality that you are facing. I cannot tell you that I know how you feel, but I do care and I so hope that someone else who shares a similar situation and experience to yours will be able to post a helpful message that will touch your heart and encourage you!

I am glad you found us here at Virtual Hospice because you will be able to vent your deepest emotions any time you feel the need while knowing that we will listen and try to be here for you to comfort you when you feel frightened and to soothe your very understandable fears. You need not feel alone, Suzanne - you are one of us and we welcome you to our forum!:-)

Are you facing your illness alone or do you have a family, husband and/or kids? I am wondering if you have close loved ones nearby with whom you can talk openly about how low you are feeling.

I sense the desperation in your words when you say you cannot wait for three or six months to have your feelings of depression and despair alleviated as every moment of your life is precious and you need to feel at your best to handle your daily challenges. I can see how you feel overwhelmed by doing the typical things that you once did without any thought, just as those you observe in the grocery store are mindlessly doing.

What you are going through must feel so terrifying and yet despite the terror that at time grips you and refuses to let go, you ARE resilient! You have been dealing with this cancer since 2009 - that's a long time to feel that a disease has control over your body and your future. No wonder your mind is struggling with negative thoughts! You really ought to feel proud of yourself for how well you have handled everything so far - you are super strong and brave, Suzanne!

You may want to consider asking your doctor if you could discuss your feelings and some potential medications that could help maintain or boost your energy levels and lift your mood a little. I don't know if this idea would work in your situation but it may help to raise the topic of conversation and to explore the possibilities with your doctor.

I wish I could say something profound to make you feel more hopeful in this very moment, but all I have to offer you is the simplicity of my empathy and admiration.

It is so human to feel afraid and to fear the future when life is at stake. I know there are many variations of the following quote, two of which I am posting with you in mind. I hope you will see yourself in both versions as I do! 

"Courage is being afraid but going on anyhow." ~Dan Rather

"Courage is not the absence of fear. It is acting in spite of it." ~Mark Twain

Please write any time and anything your courageous heart needs to share and trust that you will be given a reminder that you are a living inspiration! Just knowing you are in a safe place among virtual friends may help to ease your heartache and fears, Suzanne and that is my fondest hope for you!

With affection -hugs- xo
Cath1          
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Reply by chemobrainfog
10 Jul 2012, 2:12 PM

Dear Suzanne,
I found this website and your words from someone on twitter and I joined the site so I could offer you my support and love.  

I can't even begin to imagine how you are feeling but you shared your soul with this community and now, I hope, with a larger global virtual community, too.

I wish I had a magic wand to take away every one of you fears.  I sense the urgency in your words, in your desire to spend your days without this fear looming over your head.  It has to be so difficult to live like this.

You do have an emergency to live and I hear your frustration in not wanting to waste even one precious moment being sad.  Be gentle with yourself.  Be kind to yourself.  And know that you are being supported from more people than you can possibly imagine.

You are not alone.  Ever.  

Much love,

AnneMarie

PS.... I want to add one more quote....You are filled with courage.  The fact that you were able to put your thoughts out like this takes tremendous courage.  

Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow.
 
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Reply by Idelle
10 Jul 2012, 3:37 PM

Hi Suzanne,

May you take strength and solace in knowing that many people are thinking of you today and sending love.  We don't know each other, but I am one of them.

Idelle 
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Reply by chemobrainfog
10 Jul 2012, 7:07 PM

Hi Suzanne,
I wrote a blog about this wonderful website and specifically, your message.  I only mention the blog because I told the readers if they wanted to leave you a message without "joining" this site, I would be happy to pass the message along.  The following is from Christine.  I will let her words stand alone as they are very powerful:



Dear Suzanne, I am you and you are me, fighting the same battle, day in and day out. Your right, it never goes away. I have been living with Metastasis Breast Cancer now for almost 3 years. I have learned and it took a while, one day at a time, only live in the present, even if it's a bad day. I found thinking about the future was impossible, and I would roll up in a ball and not function. I now live for the day I am in, whether it is a good day or bad.
I have strong faith in God and I know it will be so much better on the other side, but the leaving and the dying while you are living is very hard. One day at a time and enjoy each minute of that day. If you let the dying part overwhelm you, you will lose yourself. I want everyone to know I can do this with my head up, and being strong right up to the end. I am here for you, and these ladies on the blogs have helped me so much, because I have also found someone to listen to me, and I feel like I am not alone anymore. Anne Marie please send this on, I could not log into the hospice site, Thank You, Just hope I can make some what of a difference.


 
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Reply by CarolynMarie
10 Jul 2012, 9:02 PM

Dear Suzanne, (Passionrose)

I can tell you are an incredibly courageous person already from what you have shared so far!  I commend the other people on Virtual Hospice too for their kind and compassionate words of wisdom they have shared.  It makes me feel proud to be part of this community and I do feel strongly that this is a safe place to say anything you need to say!  

I feel for you and it is true, your prognosis sucks and it must be next to impossible to feel overwhelmed, facing the possibility of so limited time on the planet.  Any lesser human would crumble into a ball, but you are still going and some days even foing strong!  Kudos to you!  

I like how you write in English, because I can hear your lovely French accent in your words by how you write ~ just saying.

I had breast cancer in 2009 and was diagnosed with bone metastases October 2011 and have been on chemo since November 2011 for my second cancer.  It sounds like the only difference in your & my diagnosis is that yours has gone to your lungs and you originally had IBC.  I had invasive BC, triple negative, lymph node positive, reconstruction - DIEP, right mastectomy, left prophylastic mastectomy.  My first 2 chemo medications (since November) did not work and they allowed the cancer to spread.  It's in my left arm, at the base of my skull, pelvis, both hips, sacrum, sacroiliacs, most of my vertebra in lumbar and thorasic areas, between my shoulder blades, left femur and left tibia.  I try to put it out of my mind. but I can say honestly, esery day, my mobility saeems a bit more comprimised from all this.  It is becoming increasingly difficult to move - mostly when it involves my hips.  

Is it because the cancer is in your lungs that you feel that your time is so limited?  I'm guessing this contributes to your sense of urgency.

Sometimes I look around at who seem to be "ordinary" people, and sometimes wonder about their lives, what their worries are, what they care about, if they have health issues, or if they might be living in a "sick" body, etc.   Sometimes, I catch myself feeling a bit envious of others who don't have to feel that their time is so limited.  The thing is, you can never tell by looking at them, what troubles they might be facing.  Typically, at a glance, no one can tell that I am sick either.  Although this week, my hair has started to fall out in clumps, so soon I will be bald again, so unless I wear a wig, some people might guess I am sick.  I hate looking sick!  

I don't blame you at all for feeling robbed of your time.  Do you mind if I ask how old you are?  You look very young in the picture.  I am 48.  I don't blame you for having bad days but I sure do wish you would have more good days than bad!  I figure, I only have so much time left and I have no control over how long or short that will be.  The way I see it is that it's no fun to be grouchy.  If you face the world with a grouchy attitude, then grouchy will come back to you and hit you right in the face.  If you face the world with a happy outlook (just happy to be alive - way better than being dead), then happiness greets you back!  I know some days are very tough and then you need your outlets to vent all your frustrations and cares!  I don't want to waste any time feeling grouchy or mad at the unfairness of the situation, because it is just not fun at all!  I want to make to most of all the precious time I have left!  I don't want to have any regrets, spending time being nasty or sad.  It's just not worth it!  If I do wake up or find I am feeling low, I allow myself to wallow in it for a little while, if I need to.  Vent in a safe place and then do something I enjoy!  Lunch with a girlfriend, go swimming, write, bake-if I feel up to it! walk my dogs - if I feel up to it, or just phone a friend who usually picks me up!  

Just FYI- I do take anti-depressant meds too, but they only take you so far and they enable me to feel like myself.  They are not a "Happy" pill, but they do help me cope!

For me, I find it helps to face things head on.  Cancer.  Death.  Whatever I have to deal with.  It makes me feel more in control!  Hope some of these things brings you some kind of comfort.
 
Take care of yourself Suzanne and keep in touch!  Know we are always here for you. 

Love & hugs,
CarolynMarie xo 
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Reply by Jimmie
10 Jul 2012, 10:01 PM

Suzanne:

I have read your posts and the responses to it several times.  I have waited in silence to see if I might have anything to offer you that might be of some comfort - and I have only been answered by silence. So, I am unsure of myself when I address you.  I am not confident in the value of my words. Nevertheless, uncertain or not, it is impossible not to write becasue you seem so deeply in need of loving support, and companionship.

The responses to your post are very moving.  They are responses that are genuine.  They encircle you and hold you with tenderness and understanding just as, were they able to be near you, these women would do in person with theri arms and their hearts.
I hope you do in fact have friends near who can comfort and accompany you in that fashion.  It is important to speak and to be spoken to with affection and understanding.  It is just, if not more important, to be held.

I believe it is deeply important that you give voice to the hearbreak, and grief, and anger, and weariness. I believe "the only way out is through".  I used to long to get back to normal.  I have come to understand that there really is no going back.  You move forward through a crises such as yours one stumbling step at a time.  You let the past slip away, speaking the truth of the moment at hand - your truth, YOUR truth - however traumatic - as best you can, while taking comfort - as best you can - in the comany of those who have promised to stay with you regardless of where this journey takes you, regardless of how difficult it becomes.  That is the promise I hear in the words these women have sent you - that they will stay with you and embrace you in their care.  You can let go; you can let go.  They will hold you, and nurture you, listen to you, honour you...and protect you, as best they can, with their compassion. These women are not the "ordinary women doing their regular thing" you mention.  They live in your world; their hearts have been broken in your world; and it is with these broken hearts that they turn and care for you as one of them.  They are lovely, warm women as is obvious from their words.  You will find islands of refuge and rest and courage and hope within their company

Things will change - subtly perhaps and not easily, but things will change.

I hope you find some rest tonight knowing that these women are holding you in their hearts.

Jim
  
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Reply by chemobrainfog
10 Jul 2012, 10:12 PM

I hope you keep seeing my face until you can't stand to look at it.....  Here's another little message left for you by someone who is mid-way through chemo for stage 3 breast cancer:

I don't have any words of wisdom and I have NO idea what to say except that I am sending prayers of hope for as many peaceful moments so that Suzanne can experience more joy each and every day. 

Please feel free to send this on. I am new to the blogging world, posting and leaving messages. 

Best,

Kirsten
 
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Reply by CarolynMarie
10 Jul 2012, 10:53 PM

Oh Jimmie,
You are so modest about your confidence of your words!  You highly underestimate yourself!  When you talked about the strength and the compassion of the women on this site, you made me cry.  I halve felt the warmth and compassion lift me up.  But remember Jimmie, you too have just as much to offer with your wisdom, kindness, insights of the heart!  Keep sharing and be confident that your words fall upon open hearts and heal as they may.  Thank you for sharing!

I also wanted to add that I love the quotes you all included about courage!  Awesome! 

Suzanne, I am so happy you started this topic too!  It is important to acknowledge the bad & the ugly part that robs us of so much, when fighting cancer!  

Take care!
Big hugs!
CarolynMarie xoxo 
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Reply by Cath1
11 Jul 2012, 12:07 AM

To all of you who are posting or being posted by proxy here in this forum and especially on this thread as a way of enveloping Suzanne with your wishes, wisdom and your very warm welcomes as her newfound, virtual and "fearless friends", (attributed with thanks to AnneMarie aka chemobrainfog), I feel so happy and hopeful and indeed humbled tonight by the sheer outpouring of love and support you have contributed for Suzanne!:-) 

No wonder we're all feeling a little awestruck and teary both as we are encircled by love in our online colony of care that includes so many compassionate women and men too, (yes Jimmie and Tian and Brayden and Mark99 et al:-) Suzanne, we promise you and we mean it - you are not alone!

Suzanne, last night I told you that you are a living inspiration, and today everyone else here confirms it in case you had any lingering doubt!;-)

So much gratitude fills my heart on this lovely summer's eve because of everyone here!:-)

With affection -hugs- xo     
Cath1

PS I didn't intend to write another of my lengthy and unedited essays, so to Jimmie I will simply say "Ditto" to CarolynMarie's perfectly pointed message to you as neither her message nor yours can be improved upon!:-)
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