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Comfort/ Support or Help for Teens? 
Started by CarolynMarie
09 Mar 2012, 3:19 AM

Hello Lovely People!
This is my first post here, so please forgive me if I don't get things right.  I am 48 and have stage 4,  metastatic breast cancer, which seems to be spreading fast.  Of course, I feel like I want to do everything I can with my two teenage children, 14 & 16 - like I need to teach them everything important in case I will not be here for them in the years to come - for graduations, first dates, weddings, babies, etc.  I want to spend as much quality time as I can and leave them with good, strong memories but often I am at a loss, and they are bowled over with grief and fear.  We do cry together, and we are really hoping to have some fun on a holiday in a week or so, but I am concerned and I don't want to miss out on anything important, for their lives.  They don't like that I am so open about it, but it's how I need to be, for me.  They would prefer more denial, but I need to face things head on to cope!  What I want more than anything now is to somehow give them comfort.  How can I do this?  I won't be dishonest with them, but I want them to feel we can still have fun together, even though I am going through treatment and not feeling 100%.  I feel I am declining too quickly, but I want desperately to love them and have them feel we still have valuable time.  Does anyone have any suggestions?  Advice?  Just wondering... if you have thoughts on this.  Thank you!  God bless!
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Reply by Cath1
09 Mar 2012, 6:07 AM

Hi CarolynMarie:

Welcome to Virtual Hospice! I hope you will receive lots of good ideas and support as you struggle to help yourself and your children accept and cope with your diagnosis of breast cancer. I feel sad that you must face so many distressing emotions that must weigh you down. Your feelings need expression so you can make room for moments of lighthearted feelings that you will need to sustain you as you face the time ahead. I'm so glad you joined our community.

First let me say to you how practical and grounded you seem on the surface and yet I cannot help but sense that you are also desperate to fit in as much experience into your and your kids lives because you fear that time is fast fading. I don't know if I am reading your message wrong, but you actually seem quite positive and capable of handling your situation which leaves me frankly in awe. As you are you wear a fearless face for your children's sake I hope you know that you cannot be brave in every moment as you too come to terms with your health.

I suspect your maternal instinct is in overdrive right now as you strive to inform your children honestly so that they may know the truth of what you are going through and to prepare them for whatever may happen in the future. I am a mother so I can relate to your protective feelings for them.

It must be breaking your heart to see the kids feeling fearful and grieving. I think it may be a good idea to seek some counselling for them so that they may have safe place to express their fears and to receive reassurance and support. Perhaps you could go for counselling as well to help you cope with their feelings as I am sure you are also grappling with a host of your own. Outside perspectives can help.

I have four kids. Twenty years ago I had a minor skin cancer on my nose and it was surgically removed. While I was ultimately fine, when I told my children three of the four seemed to be able to handle the news and to expect the best, yet my eldest teenage son was tearful and terrified as soon as he heard the word cancer. He is a very sensitive person as am I and some people just find it difficult to grasp the harsh facts of life especially when someone they cherish is involved and when theirs and/or a loved one's sense of security is threatened.

Your kids adore you I'm sure and you are their main love and security and they are probably feeling very vulnerable right now. Denial may be helping your kids deal with the news for now until they have some more time and help to ease into acceptance of your disease. You don't mention their father - is he in their lives? If you have extended family in your midst, please ask them to help you and the children as much as is possible.

I think it is wonderful that you are able to continue living with such determination to enjoy every moment together and to make special memories with your kids that you will all treasure all your lives. Get ready for a fabulous holiday together and please know many people will be rooting for you and your family! Write back any time you want to connect again. You are not alone, CarolynMarie. Thank you for sharing your story. I trust you will find comfort here.
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10 Mar 2012, 6:05 AM

Hi,

I am sorry to hear of your diagnosis. Simply put, I think that you'll find denial to be typical of most children...at any age. No child wants to watch their loved ones suffer and will often use denial as a coping mechanism. Not just children, but adults alike.
I can understand your need to want to teach them everything about the future (babies, weddings etc) but perhaps focus more on developing memories of the present. To build beautiful lasting memories, doesn't require taking a holiday (but nice just the same)...I found that just having the quality time with the one you love, be it watching a movie together, doing their hair etc...to be better than anything.
My sister passed away almost a year ago and she flew here (as sick as she was) to spend quality time with her siblings and say her good byes to everyone. We had alone time and she was here for my 40th Birthday. She gave me a pair of earrings and some of her clothes she no longer wore...but that didn't matter to me. The best gift I got from her, was her just being there with me! Although I knew then that it would be the last time I would ever see her, that is a precious memory I hold dear today...that she was there, to share her laughter, tears and secrets and words of wisdom.
I honestly don't think they would hold it against you, if you weren't able to take them on a trip (as you become weak) lets' say, but embrace whatever quality time you can offer them with open arms. They may remember a trip 5 years later, but I am certain they'll recall the special "Mom and Child" time more. Remember it's the little things that mean the most.
As far as the denial on their part...perhaps you could assure them that you understand how they feel and let them know that it's ok for them to feel that way, but that you're always there to answer anything and open to talking when they need.
Hope this helps...it's late and the brain is kind of foggy at this hour, and I hung up my thinking cap awhile ago!
Do take care,
Keep your strength!
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Reply by JennJilks
10 Mar 2012, 12:57 PM

Carolyn Marie, I so embrace you! You have a wonderful spirit and your children will never forget this. You are very smart. You have no idea!

You must deal with your legacy as you see fit. They are in their own space, and all you can do is honour this divide! Good on you!
There are many excellent bereavement groups for children. Check out Hospice groups in your area. 

I volunteered with an Expressive Arts Therapy Groups, which gave much support to young people ages 8 - 12 who were grieving a parent. Some were grieving a divorce, others sexual abuse, but  grief, it is. These are free.

In my view, they will need to meet with like teens as this is an important stage for teens - to fit into a peer group.
When they look back, they will respect your strength and draw from it!
Contact their school counsellor and forewarn them. As a retired teacher, I know that we need to know this. Being able to talk with friends is important. School staff need to know, as students bring their emotional issues to school, and it comes out in many ways. Helping them deal with this is important, when they are ready!
I am sure, like you, they will survive and grow to be better for going through this with you.

Talk to them about their fears. Let them know who will be there for them.
This I wrote for teachers, but it applies to parents:
It is predictable that all of us will lose a loved one. 
1. Respect their needs to talk or to be silent.
2. Deal with the issues as they arise. Talk to the Trauma Response team if you have students who are directly affected.
3. Listen to their concerns.
4. Let them you know you are upset, too.
5. Model the means by which you deal with your grief.
6. Do not tell them the answers if you do not know the answers.
7. Clear up faulty misperceptions, if they arise. (During 9/11 kids were afraid to walk home.  Kids were afraid for their pets, relatives, etc.)
8. Have them talk to their parents about their feelings. Parents need to know.
9. Let them tell their stories. Draw pictures, create poems, write letters.
10. Make a fear box. Cut out pictures from newspapers & magazines that represent their fears.
11. Write down your fears. Assign them a number from 1 - 5. have them talk about these fears with their families.
12. Help others. Give a donation to one of the relief agencies. 

You are a fabulous parent. You have already given them the tools they will need to be successful, contributing members of society!
Jennifer 
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Reply by CarolynMarie
10 Mar 2012, 4:45 PM

Wow, thank you for the outpouring of kindness and support!  You have no idea how much I appreciate your thoguhts and sugggestions!  I feel provileged to share so much of your wisdom!  Thank you so much for responding to my concerns and thoughts!  I can tell you honestly I feel comforted and also overwhelmed, by your wonderful insights and suggestions and observations, Cath1, highlanddancermom, and JenJilks!  Thank you so much for taking the time to offer so much of your heart and experience to me!  Such valuable information... and i am so grateful to you!  

When I read each of your replies, and all completely unique perspectives, I felt so comforted and grateful!  Thank you for all your wonderful thoughts and sweet comments.  
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Reply by CarolynMarie
10 Mar 2012, 5:08 PM

Continued...
Cath1, thank you.  How can you seem to kow me so well?  I do feel like I am in maternal overdrive and I do think that a lot of things are right with me & my family too.  I do have a wonderful husband too, who is very nurturing and takes care of so much for us - cooking the meals, cleaning, running th ekids to activities, running his own business, taking care of us, and I am eternally grateful for him too.  We will be married 22 years in July.   It's tough on eveyone, but I think for the most part, he copes very well.  We don't have any extended family here, as they live on the east coast, but we do have a fabulous network of good friends who help us tremendously too.  I do feel very blessed to have the friends & family we do!  

Thank you for the encouragement to keep living each day to the fullest.  Thank you for understanding about the children needing to use denial to cope.  I guess that makes sense.   

I am happy that you are still well after your cancer 20 years ago.  It does change our perspectives - but for the better.   Thanks so much for your thoguhts and kindness!

Highlanddancermom, thank you too for reminding me of the simple things and the little things that are so important!  My daughter, 14, loves to play the game, "Apples to Apples" and she loves to do the Spa Saturdays thing - giving little manicures, hair styling etc. - just for fun!  I love this too.  I am teaching my son to drive and we like to shop together!  You are so right!  I feel very fortunate to be able to go on this Mexico vacation with our family as we haven't been on a real family holiday in 4 years!  It will be great to just enjoy some time together and swim or float around in the ocean! I am really looking forward to the family time!    I always think of Mother Theresa when she said somethign to the effect of , "If I can' do great things I will do small things in a great way!"  It is so important to remember it is the time and the little things that make all the difference!  Thanks so much for your thoughts and your kindness!  I really appreciate your post!!!

JennJilks,
Wow, thank you for all the very practical and excellent suggestions about Art and peers who can relate and a fear box!  Excellent suggestions!  I am a teacher too - or I was for 18 years before breast cancer took me on my extended sabbatical.  I love the creative ways you have suggested for helping them cope with things!  I guess it is okay to let them use denial as they need to.  I have taken them to counsellors about 3  or 4 times in total over the past 2-3 years, but my son is not keen and feels it's strange to talk to someone he doesn't know.  My daughter seems to just want it to be "all better" after a meeting or two, and she says she doesn't need to go, so I just respect that and don't force counselling on them, just because it helps me.  I have let their high school teachers and counsellors know what they are dealing with at home, so they can appreciate what the kids are dealing with, should things surface emotionally, at school.  Good advice.  I love your list to teachers.  Such great suggestions!  That should be published somewhere!  

I am definitely going to work on some of those suggestions!  Thank you so much for taking the time to respond to me, and for your compassion and wisdom, ladies!  I appreciate your thoughts tremendously!  Thank you & God bless!
love always,
CarolynMarie
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Reply by CarolynMarie
10 Mar 2012, 5:10 PM

Sorry about the typos.  I'm on my ipad, the dogs are barking, and putting muddy footprints on the kitchen floor, as they come in from the back yard, the kids are watching a distracting show on TV, right here too, so I am a bit distracted, even though I am trying not ot be.  Thanks again ladies!
Hugs & love,
CarolynMarie xo 
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Reply by Cath1
11 Mar 2012, 2:22 AM

Dear CarollynMarie:

What a sweet anf thoughtful soul you are. Thank you for giving us all your feedback! It really makes me feel good to know that the experience and advice I shared with you made a difference.

You prove my theory correct, in that I often find that those whom have experienced suffering are the most compassionate and generous when it comes to giving of themselves. You are the epitiome of a selfless and wise person and I feel honoured to communicate with you. I'm so glad you are now a part of our Virtual Hospice community. Your presence here will no doubt broaden and deepen our conversations. I have a feeling I will learn great things from you.

I admire immensely your ability to be positive about life and people despite your health worries and the concerns for your kids. I'm really happy to know you have the loving support of your husband and that your kids have such a great Dad! Your gratitude for all your blessings is very touching. I think it is so important to acknowledge what we have rather than focusing on what we don't, though it's not always easy, gratitude helps restore perspective in times of challenge, I find. 

I love your openness and the way you write! You are very down to earth which makes it easy to want to get to know you better. I can practically visualize your enregy it is so dynamic! You have a gift to be able to express yourself and your feelings with authenticity which makes me feel I do know you better than can possibly make sense!:) From your responses it seems you have been dealing with your cancer for quite some time and that has got to be tough as you say for you and all your family. I have extended family on the East coast too - good people down home!:) Reslilence is yet another of your gifts because it takes a toll being ill for a prolonged period of time.

Your husband and children are so fortunate to have you in their lives as you teach them by example to honour the truth of themselves and others, to seize the moments large and small that give life its meaning, and to cherish the love and kinship of family. Please give yourself a great big hug and some well-earned pats on the back for your lionhearted courage and your loving kindness! You are an inspiration to me Carolyn Marie, and so is your young family! Please keep writing here - you are a big asset to our community and I look forward to connecting with you again one day soon!:)

Happy Saturday night to you and yours and happy dreams about your family trip to Mexico!:)  

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Reply by Jimmie
14 Mar 2012, 1:22 AM

Carolyn:

I read your post and the responses last night.  I was humbled
by your courage and integrity in the face of such traumatic challenges.
I was also struck by the wisdom and compassion reflected in the various responses.
They seemed to be of real help to you.

My name is Jim and I have been dealing with cancer for ten years now.  I am currently in remission following a stem cell transplant six years ago.  The remission is a finite one and I am told I can expect to relapse sooner rather than later.  My wife is dealing with an untreatable and terminal neurological illness.  Because of its genetic causes, that illness also affects three of our four children, and possibly our grandchildren. I guess that's my price of admission to these discussions.

I am writing to simply offer my support and friendship. I was and am not presently as brave or insightful as you.  I have no practical suggestions to make in terms of your children.  If the truth be told, I am afraid to look too far into the future particularly in terms of my wife - let alone plan for it.  I manage the days as best I can caring for her.  There is a heaviness and anger which cripples my spirit.  I am no longer angry about my own illness, but I remain angry and distraught when I consider the lives of my wife and children  

I am writing to you as if we were in the same hospital ward.  I am writing to you in the spirit of a mutually caring community that at times arises within such spaces.  I am writing not with answers, but simply with an offer of friendship, a compassionate friendship.  You need not respond.  It is enough perhaps that my offer of friendship has been made.  Sometimes the knowledge that others in somewhat similar circumstances are prepared to walk with you as best they can, in whatever way they can is of considerable comfort.  At least, I have found that to be the case.

No answers, no star spangled words of wisdom, just an offer of recognition and friendship.  I will keep track of this site, with your permission, and write again should I feel that in doing so I might be of some help.  In the mean time, my words dry up, as they must always do in the presence of individuals of such grace and fortitude as you.

Take care...

Jim
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Reply by Cath1
21 Mar 2012, 6:29 PM

Dear Jimmie:

I know you posted your message for CarolynMarie but I hope you will understand my need to respond to you.

When I first read your message I was quite literally blown away by your story and by the poignancy you artfully expressed. Actually, your words made me cry and I could not for some time think of any words that could possibly be adequate to explain my response to your post. Talk about feeling humbled.

You are a very deep and insightful person, well beyond your own assessment of yourself. Your honest sharing of the truth of your feelings touched me more than I can ever tell you. How wonderful of you to have reached out to CarolynMarie and to us all with your story and with your support.

I am still rather speechless when trying to express to you how you have affected me, but I hope you will continue to reach out to us here in this community. You and your family have a special place in my heart and it is a warm place filled with hopes and dreams and courage where I keep my secrets and say my prayers. 

Until next time, please keep writing . . . you are gifted in the healing arts.

Cath1
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