Help from friends afar.

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midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Help from friends afar.

Postby midlifemom » Sun Jul 17, 2016 7:11 pm

Most of us have experienced the awesome help we get from others when going thru treatment; meals, dog walking, errands, babysitting, yard work, etc.
But what about from friends far away?
I have a fantastic friend who wants so badly to help, but lives several hours away.
I'm not up to having a guest and she can't afford a hotel . - cause I'm only awake and doing things a few hours per day.
Any ideas on help that can be given from afar?
I can't think of internet research I need now, but that's the road my mind takes me down. Don't need any meals "sent". She's a great help just staying in touch with me but she wants more and I have no ideas.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

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mypinkheaven
Posts: 459
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

Re: Help from friends afar.

Postby mypinkheaven » Sun Jul 17, 2016 7:24 pm

Sounds like a very nice friend!

Is there some music you like or maybe an audio book? A new robe? Some "happy" pillowcases? A lap blanket?
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

macpudd
Posts: 120
Joined: Tue Jul 21, 2015 7:00 pm

Re: Help from friends afar.

Postby macpudd » Sun Jul 17, 2016 7:51 pm

Sometimes I find a friend from afar is a bit like this forum, because my friend is not in daily contact with the rest of my support network I feel I can tell him things that I would not say to those physically closest to me cause it might upset them, this might be a bit unfair to my friend but he has said he is comfortable with it.
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm tumor on left side of brain
commenced anti epileptic and steroids and
insulin.
01/25/18 brain craniotomy 80% of tumour removed pathology says gbm4
6 weeks of rad and Temodar chemo and then 6 monthly cycles of Temodar
MRI in Oct no tumor
Mri Jan 2019 tumour growth Feb Pet scan tumour 6cm, no surgery, starting Avastin also Lomustine

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Help from friends afar.

Postby midlifemom » Sun Jul 17, 2016 8:43 pm

macpudd wrote:Sometimes I find a friend from afar is a bit like this forum, because my friend is not in daily contact with the rest of my support network I feel I can tell him things that I would not say to those physically closest to me cause it might upset them, this might be a bit unfair to my friend but he has said he is comfortable with it.

Macpudd,
That is also my situation. I use this friend to talk to. I've explained how important this is to me, that is a great way of helping me. But she keeps offering more, what i need, which I just don't know.

Thanks pink heaven. I will have to consider some sort of special item she can provide.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Help from friends afar.

Postby jhocno197 » Sun Jul 17, 2016 9:23 pm

Dvds? Books?
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

mariane
Posts: 683
Joined: Sun Sep 13, 2015 6:16 pm

Re: Help from friends afar.

Postby mariane » Sun Jul 17, 2016 10:23 pm

I have several friends who pray for me. One of them has been attending the Holy Mass every day for me since got diagnosed over a year ago. Every day she has been calling me and chatting. Her strong faith keeps me alive.
mom of now 11 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

Soccermom2boys
Posts: 218
Joined: Tue Nov 10, 2015 10:29 pm

Re: Help from friends afar.

Postby Soccermom2boys » Sun Jul 17, 2016 11:17 pm

This is a simple one and requires only a cell phone that texts and takes pictures! Have her send you a "smile a day" which can be a picture or image of literally anything that she thinks would make you smile from a field of wild flowers to someone wearing a hoodie that proclaims "I pooped today" (no lie, man was wearing that one day when I was at the mall) to a sign or plaque she comes across with just the right words. Only requires minimal effort but loving thought on what might make you smile. When I was going through radiation a dear friend/co-worker would send me some hilarious memes about work (we are high school math teachers) or just silly ones she would come across. They never failed to make me smile, especially when I didn't think I had it in me. Those to me were so much more needed than some of the other well intended gifts people gave. Just a thought, I mean hey, who couldn't use an extra smile every day, right? :D

if I was tech savvy enough I would send you one of them that makes me smile every time I see it, but for the life of me could not figure out how to send an image. Sorry.
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Help from friends afar.

Postby midlifemom » Mon Jul 18, 2016 7:55 pm

Thanks all for your wonderful ideas.
Soccer mom - that's a good one. I think we could all do with a reason to smile each day.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?


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