A new idea: feedback requested

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ginabeewell
Posts: 558
Joined: Wed Oct 24, 2018 10:30 am

A new idea: feedback requested

Postby ginabeewell » Thu Aug 11, 2022 1:10 am

Hi everybody,

And apologies in advance as this post isn't so much about support but feedback that might help me build and launch an idea.

I know many here already know that I turned my Facebook group content into a public blog for anyone who might benefit from looking at it. I'm glad it's out there, I can see that some people are spending a lot of time with it, which would suggest there is some value there - but it's been nagging at me that it's not really making it easy for someone to start to engage four years into my journey, when the key need for the average patient is right after diagnosis.

weareallmadeofstars.net

So I had an idea two weeks ago and would love any feedback from this group about particular pain points or topics you think would be broadly valuable to incorporate as part of it.

First, the idea:

On September 11, 2022, I will hit the four year anniversary of my diagnosis - officially doubling my initial prognosis of 1-2 years
One year after that, on September 11, 2023, I will hit the five year mark, which Dr Google had me believe, rightly or wrongly, I only had a 10% chance of reaching.

So, across the course of the next year, I'd like to launch a content series on my "Strive for Five" that shares an accelerated look at my four year journey and what I learned along the way. It would have three components:

* Substack newsletters (weekly or biweekly) - that reprise some of my 144 original posts with new commentary; at the beginning, this will be the real truth behind what I shared (e.g. posting "I made my own nut butter" vs the reality of being so sick after two chemo treatments that it went rancid in the fridge). Over time, what I shared with the public got closer and closer to the real truth of my experience.

* Substack podcasts - where I open up conversations with me and my therapist, whose specialty is people with life-changing medical diagnoses, and use my personal experience to explore and normalize the things patients face emotionally (magical thinking, the guilt of what this does to my family, feeling lazy as physical ability is compromised, etc.) - here is where I would really value feedback on what types of topics would be of interest

* Tik Tok (I know, ugh, but almost a requirement for any content series) - video content leveraging bits of stories, cancer tips, recipes, what not to say, etc featuring myself and eventually members of my family as they are willing to participate

It's a super aggressive timeline - but things seem to be falling into place, and my husband's past experience as a creative director means I have a lot of the necessary resources "in-house." To be honest, I'm scared sh*tless - but I'm still on steroids to help with liver damage, and my impulse control is way down, and I think I'm just going to throw caution to the wind and do it.

Welcome any and all thoughts about how to best deliver value via this experience - thank you!!
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

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JJH
Posts: 404
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Re: A new idea: feedback requested

Postby JJH » Thu Aug 11, 2022 11:50 am

Gina -

For your "Strive for Five" objective, I would suggest that you focus on the scope of your presentation in the following two ways

  1. Determine the specific target group that you are interested in reaching with your content and focus your presentation on that particular group.
    I would maintain that your content is focused on a narrow subset of CRC patients, not all CRC patients. Your content is specific to Stage IV patients, but not to all Stage IV patients, and not to Stage IV caregivers, either. Your content is mostly aimed at Stage IV patients who have family and workplace obligations to fulfill right now while dealing with their cancer and who need to figure out how to achieve a balance among these various obligations. This includes personal obligations to advocate for the best treatments that can be managed, as well as obligations to maintain some degree of stability in family and career environment at the same time.

    I would also maintain that most Stage IV CRC patients are around 70 years of age or older, are retired and have no particular workplace obligations to meet and no longer have young children to support or supervise. So, I think that your content is mostly relevant for the younger,  under 50 y/o patients, who have specific personal,  family, and career demands that all need to be met at the same time.
    .
  2. Determine a good, consistent platform for presenting your media content.
    You currently have your content hosted on a website. I think it would be a good idea to have all of your content (text, audio, video) accessible from that same platform without any requirement to link to, or log into a Facebook account, Twitter account, TikTok account, etc.

    I think it would be a mistake to have part of your content inaccessible to those who want to access your website.

I have other thoughts that I might add later on, but I don't have time right now for a long post

MadMed
Posts: 175
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: A new idea: feedback requested

Postby MadMed » Thu Aug 11, 2022 12:43 pm

I largely agree with JJH, wanted to reinforce the statement about access without requirements. I do not have a Facebook account and are largely disconnected from a lot of useful sites that require Facebook.
I'll spare you the reasons.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

Nor Cal
Posts: 67
Joined: Sun Dec 06, 2020 8:18 pm

Re: A new idea: feedback requested

Postby Nor Cal » Thu Aug 11, 2022 6:13 pm

Great idea. Seems to me that the best use of social media would be to drive viewers to your site. Maybe do some exclusive posts for those platforms, but ultimately have it be about one location that is free and viewable by all. Just my 2 cents...
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. CEA 120.
BRAF+ TMB 5% MSS TDL1-1%
July 2020 - Present: 35 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2

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ginabeewell
Posts: 558
Joined: Wed Oct 24, 2018 10:30 am

Re: A new idea: feedback requested

Postby ginabeewell » Thu Aug 11, 2022 6:15 pm

Thank you both; definitely focused on making it easy for anyone to access content. The website / blog will continue to be open access and will likely link to other platforms.

It’s interesting to hear advice about hosting on a consistent platform; I’ve gotten counsel to broaden across multiple, and specifically ensure presence on Tik Tok from Rishad Tobaccowala who is an advisor at our company and sort of a guru of this kind of thing. That said I think the spirit of free access is really at the heart of your comments, the rest just executional detail of how. I need to figure out how to cover hard costs without putting stuff behind a paywall.

I’m happy the blog exists, but to be honest I think I need to move from a pull to push model to find an audience; leveraging hashtags for people looking for it.

In terms of audience think you are exactly right; working with some concentric circles: younger stage 4 colon cancer as my bullseye and maybe younger other stage 4 more relevant than CRC other stages given focus of the content is less treatment specific and more issues people facing mortality encounter, especially for the podcasts.

From there, suspect it is “people on a healing journey” which is actually the vast majority of my current audience surprisingly. Caretakers / support network likely last. But I leave room to be wrong??

I’ve got a proposal to share with some media experts over the weekend - luckily I’ve spent 27 years in media so can leverage my colleagues to help find tune!

Today I had a conversation with my therapist about transforming our therapeutic relationship into a collaborative partnership. Of all of this, that might feel like the biggest GULP!
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

prayingforccr
Posts: 403
Joined: Sun Jun 28, 2020 4:44 pm

Re: A new idea: feedback requested

Postby prayingforccr » Thu Aug 11, 2022 6:20 pm

Are you looking to monetize your illness?
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 TIL Therapy

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

Re: A new idea: feedback requested

Postby ginabeewell » Thu Aug 11, 2022 6:41 pm

No; my goal is to put the most valuable content out there to the broadest audience for free.

Potentially a memoir would be “monetizing” but not really the key driver of why I am exploring.

Eventually, I would like to move into speaking engagements where I share some perspective on how what I learned about fear through cancer helped to make me a better leader - but that would focus on a corporate vs individual audience.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

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JJH
Posts: 404
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Re: Feedback on your website and your signature

Postby JJH » Fri Aug 12, 2022 11:44 am

Gina -

There are a couple of things that you could do that, in my opinion, could make your current website even better.

  1. Your history of treatments / interventions.
    You have created an excellent webpage succinctly summarizing your own history of treatments. However, this list may not be very relevant for some of the viewers of your website, in particular those who are not diagnosed KRAS 'wild-type' and not diagnosed MSS. You have mentioned a bit of your diagnosis profile near the top of the treatment-history page, but I think it would be better to be more explicit at the beginning about the fine details of your situation.

    There are a dozen or more data items that help an oncologist define a patient's specific treatment trajectory, and you could spend some time at the top of the treatment-history page outlining in greater detail the specific CRC context of your treatment.

    For example, here are some of the data items that set your case apart from other Stage IV cases.

    • Context of diagnosis: Colonoscopy vs. emergency surgery For patients diagnosed with CRC, it is important to note whether the diagnosis came about through a normal screening colonoscopy, or whether it was the result of an emergency surgery to remove a blockage. In the latter case, the patient will have a reduced set of treatment options, and the timeframe for detailed treatment planning will have been compressed because of the emergency surgery. Emergency-surgery patients are left with a more difficult situation than patients who have had time for adequate consultations and have had sufficient time to request second-opinions about how to proceed.
    • Location of the cancer. You were diagnosed with colon cancer, not rectal cancer. This can make a difference for various reasons, because there are separate NCCN treatment guidelines for colon cancer (CC) and rectal cancer (RC). It would be important at the outset for any viewers of your website who are rectal cancer patients to realize this difference.
    • Type of cancer. Your diagnosis should also specify the type of cancer you have (e.g., adenocarcinoma, etc.), as well as its grade, so that the viewer can assess whether you have an ordinary type of colon cancer as opposed to a particularly aggressive type.
    • KRAS/NRAS/BRAF mutation status. Your tumor was diagnosed as KRAS 'wild-type', which makes a big difference in what treatment options you have. In particular 'wild-type' status allows you to take targeted therapies like Vectibix or Erbitux. This means, among other things, that if a viewer of your website is diagnosed instead as KRAS-mutant (not KRAS 'wild-type'), then all of your discussions about Vectibix side effects, etc., are irrelevant to them because they will never be prescribed a drug like Vectibix. Newly diagnosed viewers of your website need to know about this distinction up front before they spend a lot of time reading about a type of chemotherapy they may never receive.
    • MSI status. Your tumor was diagnosed as MSS, not MSI-H. This could be important for viewers to realize, because your list of potential MSS treatments could involve a different set of therapies from those available for MSI-H patients.
    • Baseline CEA. CEA tested at the time of diagnosis could be very important to know, especially if it is very high. Baseline CEA is very important to measure before any kind of treatment intervention is attempted, because it might turn out to be a good marker for future recurrences.
    • TNM staging code. You were diagnosed as Stage IV, but which level of Stage IV ? Stage IV-A? Stage IV-B? or Stage IV-C? And what about your N value -- How many regional lymph nodes were involved with cancer? It seems to me that you were diagnosed initially as Stage IV-A , i.e, The cancer has spread to a single distant part of the body, such as the liver or lungs (any T, any N, M1a), but it is still not clear what the T and N values were for your initial diagnosis.
    • Location, size and distribution of metastases.At the time of initial diagnosis, it is important for Stage IV patients to be informed of the estimated extent of metastatic involvement, including how many different organ sites have mets, and for a given organ, how many mets are present, how large they are, and whether they are located in places considered "difficult" or inoperable. This can make a big difference for strategies for eventual removal of these mets -- if such removal is even possible.
    • Comorbidities and general health of the patient. At the outset of treatment planning, it is important for the medical staff to obtain an assessment of the general health of the patient, including a list of important comorbities and conditions currently under treatment that could possibly influence which CRC treatment interventions might be implemented, This would also include autoimmune diseases, too. In your case, it appears that you did not have any other health problems that would have precluded certain CRC treatment interventions, but if you did have some such health problems, they should probably be identified up front.
    • Family history of CRC or polyps. It is probably important to mention if you have any family history of colon cancer. Also, if you belong to an ethnic group that is known to have an elevated risk of colon cancer, it is probably good to mention this, too.
  2. Website links in your signature. It would be good if all website references in your signature contained a complete URL, starting with the required https prefix. For example, your reference to your favorite posts webpage should be indicated as https://weareallmadeofstars.net/favorite-posts so that it shows up as a clickable link that viewers can easily access. If it is only listed as weareallmadeofstars.net/favorite-posts then it won't appear as a clickable link

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ginabeewell
Posts: 558
Joined: Wed Oct 24, 2018 10:30 am

Re: Feedback on your website and your signature

Postby ginabeewell » Fri Aug 12, 2022 2:30 pm

JJH wrote:Gina -

There are a couple of things that you could do that, in my opinion, could make your current website even better.

  1. Your history of treatments / interventions.
    You have created an excellent webpage succinctly summarizing your own history of treatments. However, this list may not be very relevant for some of the viewers of your website, in particular those who are not diagnosed KRAS 'wild-type' and not diagnosed MSS. You have mentioned a bit of your diagnosis profile near the top of the treatment-history page, but I think it would be better to be more explicit at the beginning about the fine details of your situation.

    There are a dozen or more data items that help an oncologist define a patient's specific treatment trajectory, and you could spend some time at the top of the treatment-history page outlining in greater detail the specific CRC context of your treatment.

    For example, here are some of the data items that set your case apart from other Stage IV cases.

    • Context of diagnosis: Colonoscopy vs. emergency surgery For patients diagnosed with CRC, it is important to note whether the diagnosis came about through a normal screening colonoscopy, or whether it was the result of an emergency surgery to remove a blockage. In the latter case, the patient will have a reduced set of treatment options, and the timeframe for detailed treatment planning will have been compressed because of the emergency surgery. Emergency-surgery patients are left with a more difficult situation than patients who have had time for adequate consultations and have had sufficient time to request second-opinions about how to proceed.
    • Location of the cancer. You were diagnosed with colon cancer, not rectal cancer. This can make a difference for various reasons, because there are separate NCCN treatment guidelines for colon cancer (CC) and rectal cancer (RC). It would be important at the outset for any viewers of your website who are rectal cancer patients to realize this difference.
    • Type of cancer. Your diagnosis should also specify the type of cancer you have (e.g., adenocarcinoma, etc.), as well as its grade, so that the viewer can assess whether you have an ordinary type of colon cancer as opposed to a particularly aggressive type.
    • KRAS/NRAS/BRAF mutation status. Your tumor was diagnosed as KRAS 'wild-type', which makes a big difference in what treatment options you have. In particular 'wild-type' status allows you to take targeted therapies like Vectibix or Erbitux. This means, among other things, that if a viewer of your website is diagnosed instead as KRAS-mutant (not KRAS 'wild-type'), then all of your discussions about Vectibix side effects, etc., are irrelevant to them because they will never be prescribed a drug like Vectibix. Newly diagnosed viewers of your website need to know about this distinction up front before they spend a lot of time reading about a type of chemotherapy they may never receive.
    • MSI status. Your tumor was diagnosed as MSS, not MSI-H. This could be important for viewers to realize, because your list of potential MSS treatments could involve a different set of therapies from those available for MSI-H patients.
    • Baseline CEA. CEA tested at the time of diagnosis could be very important to know, especially if it is very high. Baseline CEA is very important to measure before any kind of treatment intervention is attempted, because it might turn out to be a good marker for future recurrences.
    • TNM staging code. You were diagnosed as Stage IV, but which level of Stage IV ? Stage IV-A? Stage IV-B? or Stage IV-C? And what about your N value -- How many regional lymph nodes were involved with cancer? It seems to me that you were diagnosed initially as Stage IV-A , i.e, The cancer has spread to a single distant part of the body, such as the liver or lungs (any T, any N, M1a), but it is still not clear what the T and N values were for your initial diagnosis.
    • Location, size and distribution of metastases.At the time of initial diagnosis, it is important for Stage IV patients to be informed of the estimated extent of metastatic involvement, including how many different organ sites have mets, and for a given organ, how many mets are present, how large they are, and whether they are located in places considered "difficult" or inoperable. This can make a big difference for strategies for eventual removal of these mets -- if such removal is even possible.
    • Comorbidities and general health of the patient. At the outset of treatment planning, it is important for the medical staff to obtain an assessment of the general health of the patient, including a list of important comorbities and conditions currently under treatment that could possibly influence which CRC treatment interventions might be implemented, This would also include autoimmune diseases, too. In your case, it appears that you did not have any other health problems that would have precluded certain CRC treatment interventions, but if you did have some such health problems, they should probably be identified up front.
    • Family history of CRC or polyps. It is probably important to mention if you have any family history of colon cancer. Also, if you belong to an ethnic group that is known to have an elevated risk of colon cancer, it is probably good to mention this, too.
  2. Website links in your signature. It would be good if all website references in your signature contained a complete URL, starting with the required https prefix. For example, your reference to your favorite posts webpage should be indicated as https://weareallmadeofstars.net/favorite-posts so that it shows up as a clickable link that viewers can easily access. If it is only listed as weareallmadeofstars.net/favorite-posts then it won't appear as a clickable link



Holy cow was this helpful advice!! I think you succinctly summarized my diagnosis better than I could have - and some of the questions you posed are ones I’m not sure I could answer myself. I’m going to turn this into a page under resources.

Also appreciate your URL direction - some of the more technical stuff is not my strength.

Thank you!!
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

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JJH
Posts: 404
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Re: A new idea: feedback requested

Postby JJH » Sat Aug 13, 2022 7:09 am

ginabewell wrote:Substack podcasts - where I open up conversations with me and my therapist, whose specialty is people with life-changing medical diagnoses, and use my personal experience to explore and normalize the things patients face emotionally (magical thinking, the guilt of what this does to my family, feeling lazy as physical ability is compromised, etc.) - here is where I would really value feedback on what types of topics would be of interest

Here are some suggestions:

  • Podcast transcripts. If this substack is to be concentrated on podcasts, then I think, for obvious reasons, it would be a good idea to have a text-based transcript of every audio podcast posted in your substack. For example:
    https://gotranscript.com/blog/how_to_get_podcast_transcripts
    .
    An example of this kind of thing would be some of the podcasts posted by the nursing staff on the M.D. Anderson Cancer Center website, -- podcasts that contain full-text transcriptions of the audio for the benefit of viewers who can read printed English but who cannot understand spoken English very well.
    .
  • Hierarchy of podcast themes. In the overview of your podcast library you could provide the viewer with a structure of your podcast themes.

    For example, the podcasts could be arranged according to the various kinds of "loss" experienced after receiving a cancer diagnosis, and the therapist could then comment on ways of dealing with such losses.

    • Physical losses.
      Loss of job.
      Loss of insurance coverage.
      Loss/depletion of savings account.
      Loss of physical energy
      Loss of weight
      Loss of muscle mass
      Loss of sense of smell, taste
      Loss of hair.
      Loss of bowel control
      Loss of sexual function
      Loss of libido
      Loss of sensitivity (peripheral neuropathy)
      .
    • Psychological losses.
      • Emotional losses
        Loss of positive self-image / body image
        Loss of hope --> depression
        Loss of sense of calm --> fear
        Loss of sense of control over life events
        Loss of old friends (who don't visit anymore)
        Loss of a companion, spouse or caregiver who decides to leave or break away --> grief
        Loss of previous support groups
        Loss of confidence in medical team.
        Loss of trust.
        .
      • Cognitive losses
        Loss of short-term memory / long term memory
        Loss/deterioration of logical reasoning ability ("dry brain" / "chemo brain")
        Loss of sense of direction, sense of orientation.
        Loss of interest; lassitude; general apathy.
        Loss of faith.

User avatar
ginabeewell
Posts: 558
Joined: Wed Oct 24, 2018 10:30 am

Re: A new idea: feedback requested

Postby ginabeewell » Sat Aug 13, 2022 11:27 am

JJH wrote:
ginabewell wrote:Substack podcasts - where I open up conversations with me and my therapist, whose specialty is people with life-changing medical diagnoses, and use my personal experience to explore and normalize the things patients face emotionally (magical thinking, the guilt of what this does to my family, feeling lazy as physical ability is compromised, etc.) - here is where I would really value feedback on what types of topics would be of interest

Here are some suggestions:

  • Podcast transcripts. If this substack is to be concentrated on podcasts, then I think, for obvious reasons, it would be a good idea to have a text-based transcript of every audio podcast posted in your substack. For example:
    https://gotranscript.com/blog/how_to_get_podcast_transcripts
    .
    An example of this kind of thing would be some of the podcasts posted by the nursing staff on the M.D. Anderson Cancer Center website, -- podcasts that contain full-text transcriptions of the audio for the benefit of viewers who can read printed English but who cannot understand spoken English very well.
    .
  • Hierarchy of podcast themes. In the overview of your podcast library you could provide the viewer with a structure of your podcast themes.

    For example, the podcasts could be arranged according to the various kinds of "loss" experienced after receiving a cancer diagnosis, and the therapist could then comment on ways of dealing with such losses.

    • Physical losses.
      Loss of job.
      Loss of insurance coverage.
      Loss/depletion of savings account.
      Loss of physical energy
      Loss of weight
      Loss of muscle mass
      Loss of sense of smell, taste
      Loss of hair.
      Loss of bowel control
      Loss of sexual function
      Loss of libido
      Loss of sensitivity (peripheral neuropathy)
      .
    • Psychological losses.
      • Emotional losses
        Loss of positive self-image / body image
        Loss of hope --> depression
        Loss of sense of calm --> fear
        Loss of sense of control over life events
        Loss of old friends (who don't visit anymore)
        Loss of a companion, spouse or caregiver who decides to leave or break away --> grief
        Loss of previous support groups
        Loss of confidence in medical team.
        Loss of trust.
        .
      • Cognitive losses
        Loss of short-term memory / long term memory
        Loss/deterioration of logical reasoning ability ("dry brain" / "chemo brain")
        Loss of sense of direction, sense of orientation.
        Loss of interest; lassitude; general apathy.
        Loss of faith.


Ok, you are on fire, JJH. Some of this structure you’re suggesting is helping me to take my ADD-driven, instinctual process and revisit in a way that would better help an audience. I cannot thank you enough.

As I’m editing the diagnosis post you just shared, I’m realizing I would like to maintain some of your key points and frankly credit you as the type of resource I encountered on the Colon Club, which I have been trying to figure out how to best incorporate into the blog.

Assuming you’re ok with that, at minimum, would you be willing to confirm whether you are a him or a her? Alternately, if you would want to share your name and/context behind your expertise, feel free to PM me and we can work out what you would be comfortable with, if anything.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

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JJH
Posts: 404
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Location: Europe

Re: A new idea: feedback requested

Postby JJH » Sun Aug 14, 2022 9:30 am

ginabeewell wrote:...
As I’m editing the diagnosis post you just shared, I’m realizing I would like to maintain some of your key points and frankly credit you as the type of resource I encountered on the Colon Club, which I have been trying to figure out how to best incorporate into the blog.

Assuming you’re ok with that, at minimum, would you be willing to confirm whether you are a him or a her? Alternately, if you would want to share your name and/context behind your expertise, feel free to PM me and we can work out what you would be comfortable with, if anything.

Gina-
Thank you for your kind words. Feel free to use whatever content from my posts that you find useful. I do not need to receive credit or acknowledgement for these contributions. Just be sure to fact-check anything you decide to use in order to check for possible errors or omissions. I prefer to remain incognito here as a quasi-anonymous contributor, and that's one reason I'm here rather than on Facebook, Twitter or TikTok.

Take care, and best wishes for success with your "Strive for Five" initiative on Substack !!

JJF, male, software developer (retired)
Last edited by JJH on Tue Aug 16, 2022 12:15 am, edited 1 time in total.

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ginabeewell
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Re: A new idea: feedback requested

Postby ginabeewell » Sun Aug 14, 2022 10:06 am

Thanks for weighing in; think this all makes sense and should work well. Right now I’m editing your post mostly to change your references to “you” to references to “me.” And maintaining the why things are important for patients while taking out reference to why things would be important for the blog.

I need to get some additional diagnostics from my care team to address some of the outages you pointed out; so if you are willing to make sure I am communicating those appropriately I would be very grateful. I think the utility you’re helping me to add to my website will make it so much more helpful for others, so while I don’t want to gush, I do want you to know how grateful I am for the time you’ve spent advising me.

I had some back and forth with Rishad yesterday; beyond getting a thumbs up on the actual content, he told me I need to promote on LinkedIn, which I find even scarier than the idea of Tik Tok. But I’m gearing up to do it regardless. He thinks I should have a goal of 500 subscribers by the time I launch on Sept 11; I’ve got about 80 on my blog and 600 on my group - but I’m hoping to leverage a broader network to reach folks who might be earlier in their journey, as at least initially my focus will be on what happened those first few weeks.

I will certainly be asking folks here if they would be willing to sign up and share - you can find me at Strive for Five by Gina Jacobson on Substack or connect with me on LinkedIn (with a note of context if you don’t mind, because most of my invitations there are from people who want to sell me things!).

Thanks again so much, to you and to all who have weighed in. I’m getting increasingly excited about the opportunity to make something more of my experience.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

MadMed
Posts: 175
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: A new idea: feedback requested

Postby MadMed » Sun Aug 14, 2022 8:43 pm

I sent a LinkedIn connect request.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

User avatar
JJH
Posts: 404
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Re: A new idea: feedback requested

Postby JJH » Tue Aug 16, 2022 12:17 am

ginabeewell wrote:Right now I’m editing your post ... if you are willing to make sure I am communicating those [edits] appropriately I would be very grateful.

Gina -

If you would like comments on any of your edited drafts, please feel free to send the drafts to me by PM and I will see if I can help. Keep in mind that I will be traveling on the high seas most of the time between now and your September 11 launch date, and satellite communication at high latitudes is intermittent and difficult to say the least.

Take care ...


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