My blog is (wonky but) live...!

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ginabeewell
Posts: 532
Joined: Wed Oct 24, 2018 10:30 am

My blog is (wonky but) live...!

Postby ginabeewell » Wed May 04, 2022 10:25 pm

I spent last weekend building out a very basic blog and populating all the Facebook posts that we made in our private group, so that public audiences would be able to see updates from the past 3 and a half years.

Thought there would be about 50 posts - there are more like 135!!

I remember how desperate I was to Google patients who looked just like me in the wake of my first diagnosis; and I'd love to build out some additional content about the kinds of things that were useful.

Maybe a full page of: WHAT NOT TO SAY TO A CANCER PATIENT

For anyone who would like to poke around, one thing that would be valuable is figuring out what kind of tags I want on the posts. Things like HAI pump seem obvious; curious what other things people might specifically want to search for info about - so feel free to weigh in if you have thoughts? Maybe there is an administrator of this forum who would know common search terms!

www.weareallmadeofstars.net

What other things were you looking for when you first got diagnosed? Besides proof that you would live, that is?
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

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Peregrine
Posts: 41
Joined: Tue Mar 01, 2022 1:18 am

Re: My blog is (wonky but) live...!

Postby Peregrine » Fri May 06, 2022 12:27 am

ginabeewell wrote: ...I remember how desperate I was to Google patients who looked just like me in the wake of my first diagnosis; and I'd love to build out some additional content about the kinds of things that were useful.

Maybe a full page of: WHAT NOT TO SAY TO A CANCER PATIENT
...

Ginabeewell -

Thanks a lot for posting the link to your new blog-post website! I'm sure this resource will be useful to a lot of CRC patients.

If you are looking for additional content on WHAT NOT TO SAY TO A CANCER PATIENT you can get some ideas from this post:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53204&p=420586&#p420586

Take care ...

User avatar
ginabeewell
Posts: 532
Joined: Wed Oct 24, 2018 10:30 am

Re: My blog is (wonky but) live...!

Postby ginabeewell » Fri May 06, 2022 8:35 am

Peregrine wrote:
ginabeewell wrote: ...I remember how desperate I was to Google patients who looked just like me in the wake of my first diagnosis; and I'd love to build out some additional content about the kinds of things that were useful.

Maybe a full page of: WHAT NOT TO SAY TO A CANCER PATIENT
...

Ginabeewell -

Thanks a lot for posting the link to your new blog-post website! I'm sure this resource will be useful to a lot of CRC patients.

If you are looking for additional content on WHAT NOT TO SAY TO A CANCER PATIENT you can get some ideas from this post:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53204&p=420586&#p420586

Take care ...


Well if this isn’t a wealth of information! And a great reminder that different patients need different kinds of support (sometimes in the same day). Appreciate this, thank you!
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

Claudine
Posts: 680
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: My blog is (wonky but) live...!

Postby Claudine » Fri May 06, 2022 2:16 pm

Bravo!!! Such detailed stories are what give people hope, thank you for sharing yours this way.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary
Lytic met L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox ; Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
Multiple small lung nodules (03/19) now gone/calcified
L3-L4-L5 fusion surgery and partial corpectomy 05/20
CEA since 03/19: high 81.1, low 3.2, now 66
MRI 2/11/22: rectal adenocarcinoma pT3 pN0 stage 2A
LAR surgery April 11

User avatar
Peregrine
Posts: 41
Joined: Tue Mar 01, 2022 1:18 am

Re: My blog is (wonky but) live...!

Postby Peregrine » Fri May 06, 2022 7:40 pm

Ginabeewell -

I think the next step would be for you to put a link to your blog website in your signature. That would give viewers here an easy access to your Facebook blog posts.

The link for editing your signature is here:

https://coloncancersupport.colonclub.com/ucp.php?i=ucp_profile&mode=signature

The link to your blog website is here:

http://www.weareallmadeofstars.net/

User avatar
ginabeewell
Posts: 532
Joined: Wed Oct 24, 2018 10:30 am

Re: My blog is (wonky but) live...!

Postby ginabeewell » Fri May 06, 2022 7:53 pm

Thank you - I hadn’t thought of that, but it’s a great idea. I think this weekend we will put a bit more time into polishing it up before we make it any more “public.” This audience is my official beta test. : )

But so appreciative of thoughts and feedback as I migrate it from something that was set up to be useful for me and make it useful for other people!
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

User avatar
CRguy
Posts: 10377
Joined: Sun Feb 10, 2008 6:00 pm

Re: My blog is (wonky but) live...!

Postby CRguy » Fri May 06, 2022 8:53 pm

On the bottom of our index page HERE
just under the topics list you will find a set of drop down menus
which defaults to All Posts ... Post Time ... Descending

IF you want to try searching the middle drop down for :
Replies
Subjects
Reviews

you may get some info for what has been popular and searchable here.

I have not found any other forum metrics as yet, which identify the actual search parameters or lists from prior search requests ... :roll:

Your "BLOG" is a great resource and please list it in your signature here ... AND ... give the CTalk forum a shout out on your BLOG !

Cheers and best wishes
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
15 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

User avatar
Peregrine
Posts: 41
Joined: Tue Mar 01, 2022 1:18 am

Re: My blog is (wonky but) live...!

Postby Peregrine » Sat May 07, 2022 7:28 am

ginabeewell wrote:... What other things were you looking for when you first got diagnosed? Besides proof that you would live, that is?

Ginabeewell -

  • The FightCRC organization has done a survey of "unmet needs" of newly diagnosed CRC patients. Here is a list of their main findings:

    1. Family and caregiver support, that recognizes unique aspects of caring for a CRC patient.
    2. Understanding of side effects at time of diagnosis (chemotherapy, medical marijuana, medication interactions, and ostomy support)
    3. Increased communication and coordination with care teams, especially with patient navigators
    4. Better explanations  of intricacies of cancer diagnosis and care
    5. Access to CRC resources, particularly for those within a specific age group, gender identity, cancer stage, race, ethnicity, etc.
    6. Mental and behavioral support, including counseling and therapy.
    7. Understanding of palliative care, medication adherence, maintenance therapy, and ending treatment.
    8. Treatment and survivorship care, access to plans and supportive care beyond treatment, tools to utilize complementary health and manage cancer as a chronic disease.
    9. Information around genetics. Clinicians to provide information and offer genetic testing.
    10. Help with understanding research, risk/recurrence, and legal support/employment.

    Reference: https://fightcolorectalcancer.org/wp-co ... _12.20.pdf

  • And here is a thread with other lists of newcomer needs:

    Facts and to-do list for "newcomers"
    https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=1855&p=488742#p488742

User avatar
ginabeewell
Posts: 532
Joined: Wed Oct 24, 2018 10:30 am

Re: My blog is (wonky but) live...!

Postby ginabeewell » Tue May 10, 2022 2:43 am

Peregrine wrote:
ginabeewell wrote:... What other things were you looking for when you first got diagnosed? Besides proof that you would live, that is?

Ginabeewell -

  • The FightCRC organization has done a survey of "unmet needs" of newly diagnosed CRC patients. Here is a list of their main findings:

    1. Family and caregiver support, that recognizes unique aspects of caring for a CRC patient.
    2. Understanding of side effects at time of diagnosis (chemotherapy, medical marijuana, medication interactions, and ostomy support)
    3. Increased communication and coordination with care teams, especially with patient navigators
    4. Better explanations  of intricacies of cancer diagnosis and care
    5. Access to CRC resources, particularly for those within a specific age group, gender identity, cancer stage, race, ethnicity, etc.
    6. Mental and behavioral support, including counseling and therapy.
    7. Understanding of palliative care, medication adherence, maintenance therapy, and ending treatment.
    8. Treatment and survivorship care, access to plans and supportive care beyond treatment, tools to utilize complementary health and manage cancer as a chronic disease.
    9. Information around genetics. Clinicians to provide information and offer genetic testing.
    10. Help with understanding research, risk/recurrence, and legal support/employment.

    Reference: https://fightcolorectalcancer.org/wp-co ... _12.20.pdf

  • And here is a thread with other lists of newcomer needs:

    Facts and to-do list for "newcomers"
    https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=1855&p=488742#p488742


Thanks, this is actually super helpful - and inspiring new ideas!
I think one of the things I need to figure out is what to include - and what NOT to include; there are plenty of things in the list above that represent topics I have no business sharing perspective upon!

Also working to clean up the functionality and navigation of the site, which has been a learning process to be sure. Until I'm ready to add to my signature, her is a link to the "favorite posts" section that links to some of what I think are the best:

https://www.weareallmadeofstars.net/copy-of-about
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?


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