• From: uk
  • Registered: Sun, 08 Jan 2006
  • Posts: 200

Topic: my dad

My Dad is now getting very weak, his appetite is very poor and he is mostly sleeping.  In the last few days he has become confused.  My heart is breaking.  Since my Dad's diagnosis in July 2005 I have visited this site regulary, more recently I have felt utter despair and extreme sadness to read the heart wrenching testimonies from cc sufferers and family members on the blogs and the discussion board.  I feel extreme anger that this devastating cancer is overlooked by cancer research scientists - I have seen little progress in treatments available since I began researching into this disease just over 2 years ago.  The creators of this website and the foundation have worked tirelessly to raise awareness of this disease and to provide an arena for sufferers to get emotional support despite having suffered the loss of Mark - Stacie, Rick and all those assisting in the Foundation, thankyou.

This may sound like a farewell speech, maybe it is - I don't know if I have the emotional strength to keep checking the board, right now I feel overwhelming utter despair and extreme sadness.  I have endured over 2 years of anxiety, fear and pain watching my dear Dad fight for his life.  My Dad has been so brave, we have shared a mixture of extreme highs or lows.  Life was never the same after diagnosis.

I am thankful that we found Dr Nesslehut in Germany, since my Dad's recurrance in April of last year, I believe that Dr Nesslehut gave us more time, more quality time, free from harsh side effects.  Only a couple of weeks ago my dad has a ct scan which again, showed stable disease.  My Dad's current weak state is due, I believe, from extreme weight loss (cachexia).  Having read up on this condition there appears to be no effective treatment available.  the confusion is due to a combination of low hb and raised urea level in the body (as my dad becomes weaker he is not taking in enough fluids).  Today my Dad is due to go into hospital (as a day patient, I wouldn't want him to spend another night in an NHS hospital) for a blood transfusion, please be thinking of us today, hoping that my Dad might regain some strength.  I will never give up hoping that I can turn this thing around.

Jules

2 Reply by marions (edited by marions Mon, 10 Sep 2007 11:46:00)

  • Registered: Fri, 12 May 2006
  • Posts: 8,165

Re: my dad

Jules,

the news I was hoping so much not to hear. 

I will be thinking of your Dad and hoping and wishing for a turn- around for the better.

Sending tons of love and hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • Registered: Mon, 09 Jul 2007
  • Posts: 8

Re: my dad

jules,
I'm so very sorry to hear that your Dad's so poorly. As another UK carer I've been following your posts in particular. You've both been very couragious I Think. God bless you both. XX

  • From: Kalmar, Sweden
  • Registered: Sun, 20 May 2007
  • Posts: 1,951

Re: my dad

I will be thinking of you and your father today Jules. You both always seemed so positive and couragous. I hope the transfusion offers some relief. Are they offering intravenous nutrition? I hope you come back again and give us good news. We are all too hoping this can be turned around.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope
  • Peter
  • Peter
  • Moderator
  • Offline
  • From: Vermont
  • Registered: Thu, 02 Feb 2006
  • Posts: 235

Re: my dad

Jules,

You and your Dad have become one of the foundations for hope on this site.  My heart breaks to hear your news.
Know that you are both entrenched in our hearts and and will always be members of this community.
May this be a time of love, closeness and a deeper knowing for you and your Dad.  I pray he remains comfortable.
-Peter

  • Registered: Sat, 09 Dec 2006
  • Posts: 514

Re: my dad

Jules,
All of us are hoping for the best for you and your dad and your whole family. We are all so familiar with your dad's valiant struggle - I hope the transfusion helps him. We're here for you.
-Joyce

  • Registered: Sat, 13 May 2006
  • Posts: 188

Re: my dad

Oh Jules, so sorry to hear such sad news. I will indeed be thinking of you, and your Dad. Being local to me, and having given me support when I needed it, can I just say that if you DO want a chat, please call.
Much love to you and your Dad.

  • From: uk
  • Registered: Sun, 08 Jan 2006
  • Posts: 200

Re: my dad

Dear freinds

thankyou so much for your kind words of support, it really does mean so much to us right now.  My Dad came home from the hospital today - I have to say that all the nurses looking after him were so kind and the Drs were very thorough.  He appears less confused and looks a better colour after the transfusion however he is very weak still and hardly eating.  He has to be encouraged to take fluids.  He was so glad to be home, I helped him upstairs and he just flopped on the bed - he looked so relieved.  My Dad is so brave, caring of others - he asks after my daughter (she has just started a new school) it seems to bring him great comfort to know that she is happy.   He is comfortable and does not appear to be suffering any pain. 

Where there is life there is hope,
Jules

  • JeffG
  • Moderator
  • Offline
  • From: Kansas
  • Registered: Mon, 16 Oct 2006
  • Posts: 1,242

Re: my dad

Jules....  Sorry to hear about your Dad.  I hope the transfusion helps with the weakness.  May you find the strength to continue.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)
  • Registered: Sat, 13 May 2006
  • Posts: 188

Re: my dad

Glad to hear he is comfortable and pain free Jules.
Again, if there is anything I can do, let me know. You know I'm not far from you/your Dad. Have YOU got support? Have you got people to help you out?

11 Reply by ukmember (edited by ukmember Wed, 12 Sep 2007 06:24:46)

  • Registered: Mon, 16 Jan 2006
  • Posts: 148

Re: my dad

Oh Jules!! just reading your posts I have tears in my eyes. I have followed your father's progress over the months and I was so hopeful that he would be able to if not beat -at least take some control over this disease.

Your father and my husband were diagnosed at roughly the same time, we joined this forum at roughly the same time, and even saw the same oncologist.   After my husband's death only 6months after diagnosis, I was really rooting for your dad and you. I am so sorry to hear that he has relapsed.

Give him my very best wishes and I will be thinking of you.
Patricia.

  • Registered: Mon, 17 Jul 2006
  • Posts: 41

Re: my dad

Jules

I do not check this site regularly now  , it took me a long time to stop looking daily after Jon died
I was so sorry to read about your Dad , you were both so helpful when we were looking for 2nd opinions and we were so thankfull to hear about Prof Lodge .
My thoughts are with you both and your family

Alison

  • Registered: Sat, 19 May 2007
  • Posts: 142

Re: my dad

Hi Jules-holding you and your Dad in my heart today.   There is a nutritional supplement called "Prosure" sort of like ensure only really high in omega 3's and calories.  Maybe if he could sip it throughout the day it might help.  When my Dave had cahchexia it helped him.  Wishing you both strength and a turn-around.  Patrice

  • Registered: Sat, 25 Aug 2007
  • Posts: 144

Re: my dad

jules wrote:

he asks after my daughter (she has just started a new school) it seems to bring him great comfort to know that she is happy.   He is comfortable and does not appear to be suffering any pain. 

Where there is life there is hope,
Jules

Dear Jules

please know that I keep you and your family in my prayers.  Comfort, happy, not suffering, hope, pretty great words, don't you think?

Barb