I just need a (virtual) hug

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I just need a (virtual) hug

by DianneMF on Thu Dec 17, 2015 12:40 AM

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Hi, I have posted on here before & I must say that out of everyone - I'm sure many will agree- that DodgerBlue offers the most straightforward thoughts & advice. We have emailed privately too & again he offered the same kind words. I don't know if it is just this time of year or what - my now 24 yr old daughter had her first seizure on December 18th & then was finally diagnosed 3 days before her 23rd birthday w AA gr 3. She will be 25 in January. Had 2 craniotomies ; radiation/chemo & then 12 months of a reduced dose of Temodar due to low neutrophil counts. Now she is done & taking supplements & continuing w a vegan diet, exercise, reiki & reflexology. To look at her or speak w her - as a stranger - you would never guess she had cancer. But there is the memory loss, fatigue, joint pain, hair that just won't grow in near the strongest radiation points I guess. She still can't find a job. I had to go back to work so she spends a lot of time alone. I just really go through the motions, you know? I can't even listen to my favorite Christmas carol anymore ...through the years we all will be together, if the fates allow. Crazy but I am in therapy on an antidepressant but it all seems so pointless. I am a pediatric OT w an extremely demanding autistic caseload. I need to work not only for my salary but my benefits. BT treatment is expensive as you all know. My marriage is falling apart; my other kids seem to resent the attention given to their sister. Friends & family seem to have deserted us ; they can't deal with it either. So, here I am on a virtual cancer post asking & needing for a hug & your prayers to keep going; to keep trying to be strong for my daughter. Before all this, I was resilient. Please pray for me to get back to that point in my life so I can be there for Kelsey. Take care everyone & a blessed Christmas & healthy 2016 to everyone

RE: I just need a (virtual) hug

by ponzlaw on Thu Dec 17, 2015 01:30 AM

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RE: I just need a (virtual) hug

by ChelleCel on Thu Dec 17, 2015 03:00 AM

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Dianne,

Virtual hugs and prayers coming your way right now!! I am sorry that so much is going on at this time of year when we should be "Cheery". I am one of the caregivers for my 27 year old sister Erica. She is battling cancer for a 2nd time. Her first diagnosis was when she was 19. She was in remission from 2009 until April 2015. Doctors have no treatment for her this time. My sister does not want to go through any more chemo or radiation treatments, so we just cherish each day we get to spend with her, whether good or bad.

I have faith that God knows what we all are going through and he is with us every step of the way. I still ask why at times. The first time my sister battled I was single and we were roommates, so I cared for her. I put all of my effort into helping her fight. But now I am married with 5 year old twins and it breaks my heart that I can not be there like I want to. Like I feel I need to. But I can't stay in bed and let depression overcome me. Each day I wake, I thank God and I ask for strength and patience.

I will pray for you from here on out. For your Daughter battling cancer, the rest of your family and for you!! Please feel free to message me if you ever want to talk directly.

RE: I just need a (virtual) hug

by Rossini on Thu Dec 17, 2015 08:46 PM

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A Big HUG coming your way from Italy! I'm not good with words.....but sure know how you feel. Take care. M. Rossini

RE: I just need a (virtual) hug

by Shereeclint on Thu Dec 17, 2015 08:52 PM

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Hi Dianne,

Reading your post made me stop and ponder the season. Christmas has lost much of its magic. The joy is muted, especially with all that is happening both within the confines of the CancerCompass site and around the world. I am reminded of a book published several years ago entitled “What in the world is going on?”

Cancer, the new leprosy of modern day life, is attacking at a younger and younger age. Now I read about Kelsey.

Have you ever read the love story between Naomi and Ruth?

Naomi was the mother in law of Ruth. They both lost everything, including their husbands who are both dead. When reading the story, one is immediately perplexed since it is sandwiched in between events which do not seem to their story.

All they had was each other. I know that you are not alone in the same way, however you are still very much alone.  The story is one of tragedy, faith, and redemption. You see, they meet a kinsmen redeemer who wipes away their tears and gives them a new life.

There are two (2) stories being played out in your life. One is the lower story, which we read about from your posts and one that you are living out every day. The other is the upper story, which is being played out on a celestial level.

Like Naomi and Ruth, you and Kelsey also have a kinsmen redeemer. Your kinsmen redeemer is closely related, and both willing and able to redeem you and Kelsey. Those are the requirements which must be met to be one’s kinsmen redeemer.

You have but only one requirement to fulfill. You must put your Faith in Him.

But it is here where I must warn you. Faith comes with a cost. Most of us who profess faith are faithful to a point. The faith I am speaking about is a Faith which transcends all understanding. This is a Faith which even death cannot crush. This is a Faith which has, in fact, raised the dead.

You do not know how your story and that of your daughter is going to play out. That is by design, not by chance. Your kinsmen redeemer has already seen the end of your story. That is also a fact.

“Come to Me, all you who are weary and heavily laden, and I will give you rest” Matthew 11:28

So what is Jesus saying? Daughter, I knew you from before the foundations of the world were even laid. I knew this tragedy would come to pass during your lifetime. And I made provisions to carry your load as only I can do. This life is filled with suffering and trials. Lean on Me, for I am your Kinsmen Redeemer, and that of you daughter as well, if you will put your Faith and Trust in Me.

“And I will lead the blind (that is, all of us since we cannot peer into the future) in ways they do not know, along unfamiliar paths I will guide them. I will turn the darkness before them into light, the rough places into level ground. These are the things I do, and I will not forsake them.” Isaiah 42:16

There is a reason that The Book of Ruth is in the bible. If you ever feel the urge, you might take a break and read it. I think you might identify with Naomi, if only for the simple reason that both of your lives have faced great adversity.

May the Peace of our Lord and Savior Christ Jesus be with you and Kelsey as you both try to navigate these uncharted and treacherous waters.

Clint

 

        

      

RE: I just need a (virtual) hug

by cinderella77 on Fri Dec 18, 2015 05:26 PM

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Big bear hug coming your way!  This site has helped me so much to see that I am not alone and that my sister who is going through so many symptoms that affect her in so many ways, well that it is somehow "normal" in relation to most on here.  It has helped me see that friends not dropping by, neighbors bowing out, family indifference and sometimes feeling alone in this is also sometimes the "norm".  I was feeling in that "place" when I first reached out for help here.  I have since started walking every evening for over an hour when my brother in law comes home from work. It helps, I talk to my boyfriend back home who tells me of his normal day and I tell him of my "normal" day.  This is so hard, today is a good day and I hope and pray that your "good day" comes soon.  My sister has GBM, radiation and chemo treatments done a couple weeks ago, it has fingers thru out her brain, they removed some of the mass before treatment.  MRI last week shows despite the treatment, her brain has shifted due to swelling and tumors including new ones are progressing.  She is still with it enough to say I don't want any more treatment and I don't want to spend my short time left chasing trials, she wants to be home.  She also did not want a support group, I did not ask her why, I guess I just respect her decision.  We find laughter where there should be tears or frustration sometimes.  There is still frustration, tears and whatnot.  Every day she does her version of exercises, yesterday I found theme from Rocky and played it for her, we laughed so hard.  We often laugh and I cherish that.  Dianne, hang in there and no that you are not alone in this, this site is a blessing.

RE: I just need a (virtual) hug

by pdbiar on Sat Dec 19, 2015 01:41 AM

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Sending hugs and prayers. Pat

RE: I just need a (virtual) hug

by number9 on Wed Dec 30, 2015 04:18 PM

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                                                     {Dianne}

resilient you remain ... you are withstanding the difficult conditions as best able

RE: I just need a (virtual) hug

by Pokie123 on Wed Dec 30, 2015 10:56 PM

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Hi Dianne.  I am sending you hugs and prayers.  I understand so very well what you are going through.  My daughter, who is also now 24, was diagnosed with gbm a month after her 21st birthday 3 1/2 years ago.  She underwent a craniotomy, followed by proton radiation and a year of Temodar.  We were fortunate that she qualified for the DC-Vax clinical trial and she completed that trail as well.  (Although it is a double-blind trial and we won't ever know for sure if she received the actual vaccine or the placebo shots).  We feel that she did receive the vaccine, or at least we want to believe that.  

Our daughter has had to deal with continued fatigue and frequent headaches, but thank God, her MRI's continue to be clean and clear and she is able to function at high levels. I hate it that these young people have had to have their lives impacted by this awful cancer.  You would never know that our daughter has dealt with this disease by looking at her and most of her friends simply don't understand it or couldn't deal with it when she was originally diagnosed.

We know that we are very fortunate so far, and we are grateful for every day that we can spend together.  I wish we lived closer so we could offer more assistance and fellowship with your daughter.  It is a lonely disease for many of us to deal with.

I will continue to pray for you and your daughter and hope that she will improve as time goes by.  The brain does has a remarkable ability to compensate for the surgery and radiation damage at times.  I also pray for better treatments and a cure that can be developed soon.  Take care of you, too!

Laurie C., Mom of Elizabeth, dx gbm 5/2012

RE: I just need a (virtual) hug

by momlooking4cure on Thu Dec 31, 2015 02:58 AM

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Laurie,

I also have a daughter who was diagnosed with GBM 1 month after her 21st birthday this past September.  She has finished the initial radiation and chemo and is beginning to start the maintenance chemo regimen.  She will be going back to college in a couple weeks.  Are there any supplements or other things your daughter has done during her 3 1/2 years that you would suggest?  My daughter keeps saying she just wants her "normal" back.  I worry about her being away at school and having to manage meds and lab appointments and doctor appointments on her own.

DG

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