TiffanyThinks #5

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Cachexia is not correct for T., because she still weighs a solid 47 kg. A real underweight patient was my mother at 34 kg (1.62 metres) at the end stage of Alzheimer close before her death.
My husband is end stage and unfortunately has developed cachexia. He first developed sarcopenia on his last cancer treatment, and later developed cachexia. Tiffany doesn't have cachexia. Looking at Tiffanys older videos, shes always been a slim build. Cachexia shows in muscle wasting and lab results. If Tiffany had cachexia, they wouldn't offer any procedures. Her white cell count would be so low she would be susceptible to infections.
I see many of the tiffanythinks 'family' talking absolute nonsense! Incidentally, how many claim to be nurses? 80% of Tiffanys viewers claim they are doctors or nurses. 79% of them are attention seekers.
I have seen
1) Tiffany has a blockage and it is likely a huge tumour.... IF tiffany had a blockage, they would not be sending her home, they would be sending her to theatre. Sepsis kills.
2) Tiffany has cachexia ........ Tiffany does not have cachexia. If she did, no procedures would be offered.
3) Tiffany is end stage....... Tiffany is not in the end stage. End stage patients have low performance scores, too weak to visit any hospital. Too weak to get out of bed, too weak to wash themselves. End stage patients are in bed all day and develop bed sores etc. If Tiffany was end stage, she would have been discharged to palliative care.
4) Tiffany is vulnerable and people shouldn't say anything which may upset her........... Anyone that puts content out to the masses should expect opinions.
5) Tiffany is in denial....... Tiffany is fully switched on and has found a subject which sadly affects most families. Tiffany is making money from her blogs, her 'merch' and the products which she recommends to her viewers via the amazon affiliate programme.
 
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Excellent assessment. So sorry for your losses. I truly believe she is terminal too and it is very sad. She is too young and has people who love her. I do hope for a positive outcome but I just think she’s in denial and left things too late, or maybe the cancer would have killed her anyway regardless. Cancer is a beast.
 
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And here we have it ladies & gents. Right from the horses mouth.
Tiffany finally writes that she is looked after by a team. Her oncologist, Cancer nurse specialist and her surgeon attend the MDT meetings and collectively the multi disciplinary team make plans together.
The next time Tiffany posts a video to say she is confused, someone needs to remind her that she has direct access to her cancer nurse specialist.
 

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You are absolutely right. I think it is exactly what happened. She put so much hope into negative biopsies and they started to believe that she doesn't need surgery.
 
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Cachexia doesnt show up all of a sudden. Ive seen older videos of hers. She!s definitely thinner now. She has trouble keeping food down, is in constant pain and on morphine. She may not be end stage but shes approaching it I think. Ive seen it with my mom. The decline was at first gradual, then swift. Same type of cancer.
 
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I really don’t know what to say but you and your husband are in my thoughts.
I can have a big mouth at times, but confronted with such realities I always fall silent.
 
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Does anyone else remember reading the replies to her request for opinions about surgery and seeing more than one response to her warning her about magical thinking?
 
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I don't think she would be able to survive the surgery mentally and physically. Does anyone else agree?
Our bodies have an amazing way of healing.
My husband has been through some quite traumatic horrific surgeries that carried a high mortality rate, but he survived. A few days on high dependancy ward and he was back at home with us.
Tiffany would of course survive surgery.
Of course I do wonder if how she would mentally cope with the healing process.
The first biopsy resulted in her needing to go stay in hospital for a night? And this second time around she needed GA and a morphine pump for what is normally done as a day procedure?
Nurses try to get patients up and walking very quickly to prevent deep vein thrombosis and other post op complications.
If I was in Tiffanys shoes I would go for the gold standard. I would jump at the chance of surgery if it got me to NED.
 
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Yes, I posted about this a little while ago. It was the first time I heard her mention that she has a CNS.
 
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I really don’t know what to say but you and your husband are in my thoughts.
I can have a big mouth at times, but confronted with such realities I always fall silent.
Hey, its absolutely fine. We made the very best out of the periods where he felt well. In many ways we have experienced things we wouldn't have done if it wasn't for his diagnosis and prognosis.

Yes, I posted about this a little while ago. It was the first time I heard her mention that she has a CNS.
Me too Ramonaremembers! Its a shame that Tiffany and Tiffany's family arent in regular touch with her support nurse. Thats what CSN's are employed to do. A go between the consultant and the patient! CSN's are able to access test results and scan results. My husbands support nurse emails me my husbands scan report and blood reports whenever I request them.
Sorry I didn't see your post!
 
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The next time Tiffany posts a video to say she is confused, someone needs to remind her that she has direct access to her cancer nurse specialist.
Not only does she have access to her CNS but she has had 24hr access to the Royal Marsden Macmillan hotline since her diagnosis. Patients are encouraged to call whenever they feel ill or have questions or concerns. All the nurses who man the phone line have access to all the medical notes and are in contact with doctors. They also pass the call details onto your team who will then follow up with you if required.
Not once have I seen that Tiffany has made use if this service, instead she chooses to report to the world that she has many unanswered questions.
 
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Does anyone else remember reading the replies to her request for opinions about surgery and seeing more than one response to her warning her about magical thinking?
O yes, the infamous delete, tick, tick, tick shenanigans when it was not to her liking. Many people gave her a sensible advice, but delete. Stupid cow.
 
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Ahhhh its sad really. I didn't know that Tiffany and her family was aware of the specifics of the surgery long before the meeting.
I actually think no evidence of disease is a term that needs changing to no evidence of visual disease. There generally is always microscopic disease lurking around that is too small for the scanners to pick up. It's great that her oncologist is doing 6 weekly scans.

Anyone happen to know how much money youtubers make from youtube?
 
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I don't think so. She is stage 3. Still can be cured. But 2 months without therapy her condition might become worse. Or maybe she really had late nearly complete response to chemoradiation that is why they waited. Who knows. Aggressive biopsies were taken radiation damaged rectum, that can be one of the reason of the prolonged bleeding. Or the bleeding can be from cancer. Probably we would know soon.
 
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That's what I thought, about the family requesting not to tell tiffany the severity of the situation. So people around her are "playing dumb". I know this kind of thing happens in some parts of asia ( I'm from japan, I hear this type of "protecting" of patients, especially with cancer). But many people have said patients are given all information in uk.
 
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In both the UK and the US the current medical ethical perspective is that patients have a right to know the truth if they are terminal so they can make decisions about how they want to spend their remaining time. In the old days in the US when a patient might have just one doctor it was possible sometimes for families to convince doctors to not tell patients. Now that cancer patients have teams of health care workers, hiding the info would not be possible as everyone on the team would not agree to withhold information like that.
 
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I honestly think she has been terminal for a while now and the surgery would never have cured her. I think the surgeon knows this and has backtracked a bit seeing the state of her mental health and how her body struggled with just the biopsy.

That video made for painful watching though, I fail to believe anyone can be that ignorant to their own situation. And Amma prattling on about no tumor? Wtf is wrong with this family honestly.
 
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I am disgusted with this whole thing. How dare she on all of it -- an absolute disrespect to so many people on so many levels. I think if we can find out if the RM uses EMR, we have our answers. I HIGHLY doubt that they use paper records. If it's EMR, then she has access to the radiology reports as soon as the docs do. The cultists are crazy!
 
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