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Any one else feel the “dark side” of cancer vlogging might be starting to rear its ugly head again with this latest video from POG family that presents a seizing and altered mental status Sarah to the entire www? Please keep in mind, I mean this not as a personal affront to these dear people who are living with one of life’s greatest hardships, but more as a discussion of the ethics and civility of it all. Privacy seems to be a value of the past. As a nurse, my “protect the patient” instincts really kicked in when it seemed Josh was pushing Sarah to keep on with the questions, maybe not understanding how incredibly painful the speech disruption probably is for her. I would have shut that down way sooner if I had been a nurse in that room. It almost, ALMOST feels like the push was done on purpose to get “good footage.” I’m not certain, and I doubt they themselves are clear in all the issues, I just know that there is a growing part of cancer and family vlogging that concerns me more and more. Thoughts? Again, love this family and not judging them. Judging US as a digital and reality TV society.
I have to say that I stopped watching soon in and I won't be watching the rest. One commenter wrote exactly what I was thinking " I almost felt like I was watching a moment of emotionally shared intimacy between a husband and wife, that I shouldn’t be witnessing, as it was just that pure between you both."
Sarahs aura hit as soon as she looked at the camera which was obviously set up at the foot of the bed. Why did Josh chose that exact moment to start asking her questions? He's got the footage and still decided to publish it?
How will it educate others? How will it teach others?
Views = Cash. The amount of videos they put out is alot for a couple that could be in their final few months as a family with young children. It makes no sense to me at all.
Oh thank you for posting this…I thought I was going to get skewered for these concerns, but posted on hopes of finding some semblance of sanity left in this world. 
I love the POG Family. I am so saddened by the decline in Sarah’s health and worry the worst will happen as she awaits 9 long days until any treatment.
I watched the latest video and was a bit traumatized at Sarah’s poor condition and Josh continuing to film Sarah. I do not understand how this was educational. Although many people commented that it was. I can’t imagine Sarah would approve to post that video. I consider the POG family to be very genuine and transparent. They emulate love and goodness. I hope this was not shown for “views”. Please let that not be so.
I also felt it wasn't loving to push her to answer the questions. If word-find or expression is difficult, I see no benefit to press her for answers. If it's going to get worse as disease progresses, why demand something she's incapable? We wouldn't do it with a stroke patient. He could have thrown out suggestions so she didn't have to struggle. When he said "root beer float", she immediately said yes, so I get the sense it is aphasia.
She needs gentleness and patience. I would not want to upset her by highlighting and pressing her for things she cannot easily do. It can be agitating and stressful. It might have precipitated a seizure if she was struggling.
It should have had a trigger warning.
I was very uncomfortable, in addition to questions of her ability to consent. It may or may not be simply an articulation issue, not cognitive capacity though.
She needs gentleness and patience. I would not want to upset her by highlighting and pressing her for things she cannot easily do. It can be agitating and stressful. It might have precipitated a seizure if she was struggling.
It should have had a trigger warning.
I was very uncomfortable, in addition to questions of her ability to consent. It may or may not be simply an articulation issue, not cognitive capacity though.
I think it's probably best if Sarah isn't in the videos anymore. Josh can just do the updates. It's very sad. My totally uneducated guess is she won't make it until Christmas even with the therapy.
The NIH clinical trial fiasco really worsened her condition. She hasn't had any treatment for I think at least 2 months.
They seem like a nice loving family and it's just heartbreaking.
The NIH clinical trial fiasco really worsened her condition. She hasn't had any treatment for I think at least 2 months.
They seem like a nice loving family and it's just heartbreaking.
I started freaking out when he did the close up right when she started struggling the most. It was just too "cinematic" for me, like someone making a movie - or "See, look how bad she is now!" For a few seconds, I even started wondering if it was staged.
But I understand that it 'is' educational. I always thought seizures had to involve a body jerking - and people trying to hold them down or keep them from biting their tongue. So I did learn something but it wasn't an easy watch. She seems to be so proud, rightfully so, of her intelligence and logical thinking, her control of her emotions, and her eloquence - I think she even mentioned it in a recent video, that she'd never had any problems with speaking and writing so it was especially difficult to lose something she was so accomplished at.
She doesn't seem as "in on it" as Tiffany or Jenny, so I don't know if I want to watch - it's like I'm intruding too much.
But I understand that it 'is' educational. I always thought seizures had to involve a body jerking - and people trying to hold them down or keep them from biting their tongue. So I did learn something but it wasn't an easy watch. She seems to be so proud, rightfully so, of her intelligence and logical thinking, her control of her emotions, and her eloquence - I think she even mentioned it in a recent video, that she'd never had any problems with speaking and writing so it was especially difficult to lose something she was so accomplished at.
She doesn't seem as "in on it" as Tiffany or Jenny, so I don't know if I want to watch - it's like I'm intruding too much.
Not at all. There are many of us left in the world that feels that the worlds gone mad. Cancer Vlogging did used to be short videos from patients, generally around scan results time. These days the videos include everythingOh thank you for posting this…I thought I was going to get skewered for these concerns, but posted on hopes of finding some semblance of sanity left in this world.
Josh said at the start of the video that it was 20 minutes on and Sarah was still recovering. Therefore I am not sure he could have got consent from Sarah to upload it.
For anyone saying they found it educational? Very bizarre. I'm sure there is med papers discussing auras & seizures, no need to watch a patient suffering real team. Its actually disturbing to me that people will watch this stuff and patients will post this stuff.
Agree that this last video was inappropriate. It crossed a line.
This may be an unpopular opinion but I find Josh very irritating. For one, the way he speaks & his mannerisms are just like Sarah's. Secondly, I don't find him genuine. He is there, taking care of her & clearly grieving but something about him really bugs me.
I do not see Sarah being able to do further treatment. As her husband he should get his head out of lala land & get hospice on board ASAP. For Sarah, for him & for the kids.
This may be an unpopular opinion but I find Josh very irritating. For one, the way he speaks & his mannerisms are just like Sarah's. Secondly, I don't find him genuine. He is there, taking care of her & clearly grieving but something about him really bugs me.
I do not see Sarah being able to do further treatment. As her husband he should get his head out of lala land & get hospice on board ASAP. For Sarah, for him & for the kids.
I don’t know much about patients rights but even with a warning I struggled with watching Sarah as she struggled. I’m thinking they said they could use these to show doctors but as for me it was very sad. I just wanted to help her. I truly don’t think he did this for money or anything. Maybe he just didn’t realize to wait till Sarah could give full permission. I wonder if he understands the state she is really in. I bet she is terrified.. This is just heartbreaking. I felt like I was intruding on their personal space. Very awkward. I’m not sure posting that video was the right choice. I can tell Sarah seems so far away. Bless her heart. Blessings to all you here on this thread. I appreciate all of our discussions here. Blessings all.
🩷 I agree that maybe she shouldn’t post the videos.
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I felt very much the same way, I also don't have the impression he had any greedy or purposeful intent, I don't think he saw it the way some of us did. I could be wrong. Again, a dissonance between vloggers and viewers and each of our respective armchair positions. I can see how someone who is praised for sharing their journey openly might not think this crossed any lines whilst many of us felt there was a more nuanced and discerning assessment to be had.I don’t know much about patients rights but even with a warning I struggled with watching Sarah as she struggled. I’m thinking they said they could use these to show doctors but as for me it was very sad. I just wanted to help her. I truly don’t think he did this for money or anything. Maybe he just didn’t realize to wait till Sarah could give full permission. I wonder if he understands the state she is really in. I bet she is terrified.. This is just heartbreaking. I felt like I was intruding on their personal space. Very awkward. I’m not sure posting that video was the right choice. I can tell Sarah seems so far away. Bless her heart. Blessings to all you here on this thread. I appreciate all of our discussions here. Blessings all.
I also had the impression that he's not aware of the gravity or sharp decline in such a short period. Which seems odd given the very dire prognosis they were just given. Why oh why did they leave it so late for her to make legacy messages? If there is anything to be a takeaway for the viewers, write your loved ones messages early on and get them out of the way as well as all financial and testate matters.
I am not sure I'll watch any more, I also felt it too personal and private a time for Sarah, I don't feel comfortable being a spectator of this. I barely watched this and mostly listened. I know I've just made a post regarding Jenny, about wanting to know more info, how they're feeling, what's going on, etc. But, this example was very different. This was certainly not what I meant or wanted with regards to cancer vloggers.
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5 mos ago Sarah posted a video titled If I Only had a Year. She talked about all the things she would/should do if the doctor told her she only had a year. She talked about going to New Zealand, wills, funeral arrangements, birthday cards and singing songs.
Sadly now she has far less time than year and I don't think she's completed any of those tasks.
I don't think they ever actually realized the gravity of her stage 4 cancer and now it's probably too late.
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Sadly now she has far less time than year and I don't think she's completed any of those tasks.
I don't think they ever actually realized the gravity of her stage 4 cancer and now it's probably too late.
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This is sad 
See, this is what I am talking about with "toxic positivity." It doesn't allow the participators to adequately prepare (not that one can ever be prepared for the death and suffering of a loved one) for what is happening in the NOW. I don't think Josh would have posted the seizure video today if he had known what a serious indicator of disease progression this is, and how is he going to feel if she succumbs to this hideous disease much sooner than they expected? He would feel awful, an extra layer of sadness and regret at a time when it is not needed. I am certain of that. The scans showed pervasive brain and severe brain involvement which is evidenced by the seizure activity / aphasia. The truth is, there is legit research out there that indicates vlogging is a helpful coping skill for patients, but, I think its usefulness comes to an end when end stage disease sets in. When that corner is turned, I think it may become a detriment. Any thoughts? Praying for comfort and peace to supernaturally show up in Josh and Sarah and the kids' lives.
Less than an hour ago, Josh posted that Sarah had a "major seizure" and was taken to the ER (A&E I think in the UK). He posted it at about 10.30 pm their time in Oregon (which is 6.30 am in London I think). He said he and her parents were in her room and "waiting for her to come back from the [ct] scan. She’s now sedated, and will hopefully stay in a sleep state for a while. The list, confused, scared, Sarah is killing me inside!!!!!" (sorry I don't know how to do screen shots but there's a closeup of his face in her hospital room, looking very grim)
Edited: Now I see the attachment - sorry for the repeat info.
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"The truth is, there is legit research out there that indicates vlogging is a helpful coping skill for patients, but, I think its usefulness comes to an end when end stage disease sets in. When that corner is turned, I think it may become a detriment. Any thoughts?"
Now that I've figured out you were posting in real time, I see your question. I'm feeling more supportive of Josh than I was earlier - they've always been so matter-of-fact and detailed about her situation, I think he probably felt he was just continuing what their plan was - to share everything, openly. I think he likely thinks it's what she wanted - she's been trying so hard to do updates herself - maybe he even promised her he'd keep everyone informed. In one of her most recent videos, she said she worried most about everyone else and the impact this was having on them. So, worried about her followers too, I would think. In any case, I'm sure it's impossible to think things over carefully when it gets so critical.
Edited: Now I see the attachment - sorry for the repeat info.
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"The truth is, there is legit research out there that indicates vlogging is a helpful coping skill for patients, but, I think its usefulness comes to an end when end stage disease sets in. When that corner is turned, I think it may become a detriment. Any thoughts?"
Now that I've figured out you were posting in real time, I see your question. I'm feeling more supportive of Josh than I was earlier - they've always been so matter-of-fact and detailed about her situation, I think he probably felt he was just continuing what their plan was - to share everything, openly. I think he likely thinks it's what she wanted - she's been trying so hard to do updates herself - maybe he even promised her he'd keep everyone informed. In one of her most recent videos, she said she worried most about everyone else and the impact this was having on them. So, worried about her followers too, I would think. In any case, I'm sure it's impossible to think things over carefully when it gets so critical.
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I fear Sarah may not have long with the increase of these seizures. She’s upset about not being able to write cards etc for her children and personally I think her remaining time would be much better spent away from the camera and with her family. I’m guessing she is on steroids loom8mg at her face- personally they messed me about terribly and I could barely think straight when I was on the high doses ( when I had total colitis).
I’m also not sure what the push for fundraising is currently for under the circumstances? Are they having to pay for the immunotherapy she needs? I wonder whether she is going to be well enough to have that, I certainly don’t think she is well enough for Disneyland etc. It’s so bl**dy cruel, isn’t it? Jenny is also look8mg very disabled now, It heartbreaking for both families. They are both so young with so much to give.
I have to say that Josh irritates me far more than Matt ever did ( I don’t watch Tiffany anymore,).
I’m also not sure what the push for fundraising is currently for under the circumstances? Are they having to pay for the immunotherapy she needs? I wonder whether she is going to be well enough to have that, I certainly don’t think she is well enough for Disneyland etc. It’s so bl**dy cruel, isn’t it? Jenny is also look8mg very disabled now, It heartbreaking for both families. They are both so young with so much to give.
I have to say that Josh irritates me far more than Matt ever did ( I don’t watch Tiffany anymore,).
Latest update: Sarah has a brain bleed and is likely being admitted to ICU 
. Someone in their comments section should have had the courage to speak the truth in love and broach the possibility that docs weren’t offering treatment because the disease has become untreatable. Hospice could have been so much more helpful for them…cancer and death are so so so wrong. 
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. Someone in their comments section should have had the courage to speak the truth in love and broach the possibility that docs weren’t offering treatment because the disease has become untreatable. Hospice could have been so much more helpful for them…cancer and death are so so so wrong. .She definitely won't be getting any treatment now since they are starting her on steroids again. They told her she had to be off the steroids to start treatment.
I fear she will not get out of the hospital this time. It's just so damn sad.
I fear she will not get out of the hospital this time. It's just so damn sad.
I applaud them both for choosing to show this moment. I DID find it educational as I assumed that malignant fluid wouldn't be as 'bad' as masses. I think back to Emily Hayward who also had MM with brain involvement. Hers WERE solid tumours and she was still able to go to the gym until a few days before she died. Yes, she had declined suddenly, had slurred speech but she wasn't bedridden. I now know that fluid around the brain and masses in the brain cause very different symptoms. Sadly, the outcomes will be the same.