Video and other stuff :)

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
DBF
Posts: 328
Joined: Fri Jun 07, 2013 1:44 pm
Facebook Username: https://www.facebook.com/#!/profile.php?id=1000008
Location: New York

Video and other stuff :)

Postby DBF » Fri May 04, 2018 11:00 am

Hi everyone,

I’m not on here too much anymore. I recently gave a speech at a fundraiser for Camp Kesem at Stony Brook University where I mentioned this wonderful forum (and Belle in particular). Have look if you’d like. Camp Kesem is a free camp for kids ages 6-16 who have a parent affected by cancer. I found out about it here on this forum originally, and now my son attends.

https://m.youtube.com/watch?v=85uWeeyXm-k

Also, I wanted to say that I am approaching 5-year survival this month. Yay! We are planning a huge party to celebrate over Memorial Day Weekend. :D

Best wishes to everyone here.
6/13 Dx @ 29 Wks pregnant, 42 yo
Adenocarcinoma, mucinous
7/13 C-sec/col resec/part. hysterectomy
8/13 Pulm embolism
8/13 Spread to liver
9/13 Liver resection
FOLFOX
CEA UP
ADAPT: Xeloda/Celebrex
2/14 oopherectomy
10/15 obstruction surg
10/17 Scar tissue removal/vsg surg
2019: NED :)
2021: NED :D
2022: NED :)
Mom to 3 boys: 24, 13 & 9

User avatar
CRguy
Posts: 10474
Joined: Sun Feb 10, 2008 6:00 pm

Re: Video and other stuff :)

Postby CRguy » Fri May 04, 2018 12:14 pm

Beautiful sharing there my friend !
warm fuzzies all around

Thank you for posting this
Mega POSI vibes moving forward
for you and your family

On the Journey with you
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

SteveNZ
Posts: 147
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: Video and other stuff :)

Postby SteveNZ » Sat May 05, 2018 5:48 am

Really great.
Thank you so much for sharing.
Bless you heaps
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
August 27th-November 2018 - Surgery and long, long recovery
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Video and other stuff :)

Postby MissMolly » Sat May 05, 2018 1:01 pm

DBF:
I began visiting this forum after becoming acquainted with NW Girl (Belle) on the UOAA ostomy forum in 2013. Belle and I quickly became Best Favorite Friends that began with a shared ostomy experience and expanded to our mutual passion for gardening, long walks in nature, and browsing antique stores. As coincidence would have it, we lived close enough to see each other on a regular basis which fostered our growing friendship. Belle lived in Battle Ground, Washington and I live in Portland, Ore.

I feel blessed to have had the privilege of knowing Belle. She was an incredible person of many talents with a genuine kindness to her soul. The world lost a bright light in her passing.

I was touched by your speech and personal narrative to the camp Kesame audience. My reaction to your speech was a juxtaposition of tears for the difficulties you and your family endured and smiles for the passages you shared of your son’s experiences as a camper and life lesson’s learned of empathy and sharing.

It is a special contribution when “old-timer” forum members, such as yourself, come back to post updates on life as you have done here. As someone who remembers your posts from several years ago, I applaud you for the achievements that you have achieved as a person, wife, and mother in the face of a challenging diagnosis. I applaud you for remembering Belle and her legacy.

Above all, thank you for sharing the video of your speech to Camp Kesame. It is a powerful and poignant reminder of hr importance of the relationships in our life in providing support and the necessary endurance to navigate unexpected health speedbumps.

My best to you in health and life,
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

User avatar
O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Re: Video and other stuff :)

Postby O Stoma Mia » Mon May 07, 2018 4:03 am

DBF wrote:...Also, I wanted to say that I am approaching 5-year survival this month. Yay! We are planning a huge party to celebrate over Memorial Day.


Thank you for checking in and for providing the link to your video presentation. It's always nice to hear from "old timers" who used to be frequent contributors here -- especially when the current news is so good, like a 5-year celebration!

Thanks also for mentioning the Kesem Camps. There are so many of them around the country, and they provide such a special experience for children who qualify.

It looks like your up-coming celebration will in fact be a double one: A 5-year cancerversary for you, and the 5th birthday for your youngest son! Soon he will be old enough to be eligible to attend Camp Kesem like his brother.

http://suffolktimes.timesreview.com/2017/03/74378/mattituck-mother-colon-cancer-survivor-advocates-for-early-screening/
Last edited by O Stoma Mia on Tue May 08, 2018 2:38 am, edited 3 times in total.

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Video and other stuff :)

Postby Eleda » Mon May 07, 2018 4:30 am

Wow,, I laughed and cried at this video,,,
Congratulations to u
I wish we had somthing like this in ireland
U are an inspiration

Well done
ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Video and other stuff :)

Postby Eleda » Mon May 07, 2018 4:31 am

Wow,, I laughed and cried at this video,,,
Congratulations to u
I wish we had somthing like this in ireland
U are an inspiration

Well done
ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Carmark and 82 guests