Tiffany Thinks #8

[Saydee]

I have now rewatched the first part of the video (the authentic bit) and noticed that she does not really finish the "Do you know what I think I can't get my head around?" thought. She mentions the organs to be removed and says she can 'accept that'. But it's not clear at all what she cannot get her head around. Has anyone else noticed?

She mentioned her biggest fear is of recurrence. She will have already been told about the risk of recurrence. Surgeons have to tell their patients the risks.

she no doubt has lost more...can you imagine having any appetite with being in pain/bleeding and in general thinking about the impending surgery. I think after this biopsy they are intending to keep her for some days in hospital and I bet they start the TPN nutrition. I just don't know how she will survive this surgery being only 45 kilos knowing all you will lose after.

TPN at home is not practical. Patients are prescribed these. Tiffany was prescribed them but stopped them. The 'milkshake' she keeps mentioning is fortisip. https://www.fortisipdrink.co.uk/
Again, weight gain is part of prehab,its not a surgery requirement.

Just saw these. Some people not being in favour of the surgery.
There are many religious nutty ones in the comments. Scary that such people walk amongst us.

Unfortunately this comes with putting your private life in public. It attracts the oddballs and weirdos.

Many young people in T's position. This young man is only 23

 

[Petro48]

She really should start making contact with people who had this surgery. I see some people in the comments (of her newest vlog) say that they had this surgery (and similar surgeries) and they are offering words of advise and reassurance to her. This is what she really needs right now. I know she has been in denial and recoiled from cancer patients previously but I hope she will not this time.

I've been sitting here thinking the same thing. At this point she needs a friend who understands. I keep seeing folks mention someone named Natalie Woodward. I looked her up and was very impressed. She is also in London. How wonderful it would be if she could give Tiffany a phone call, or contact her in some way. I don't have a clue how to contact her....any ideas? I think Tiffany could use a knowledgable friend to talk to, or a support group to lean on. Something or someone who would be more helpful than an equally terrified family member. I would think that Royal Marsden would have such info available for their patients.

 

[helpmeunderstand?]

Just read a very informative Quality of Life post TPE research article!

Quality of life after pelvic exenteration for gynecologic cancer: Findings from a qualitative study

Ashley M. Nelson, Alexandra Albizu-Jacob, Alyssa L. Fenech, Hye Sook Chon, Robert M. Wenham, Kristine A. Donovan
First published: 28 June 2018

https://doi.org/10.1002/pon.4832
Citations: 8
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Abstract
Objective
Pelvic exenteration (PE) in carefully selected gynecologic cancer patients has a 5-year survival rate as high as 60%. Thus, there is a growing number of PE survivors dealing with the effects of this radical surgery. The current study sought to explore women's physical, psychological, and social quality of life (QOL) after PE.
Methods
Fourteen women who had undergone PE for recurrent gynecologic cancer at least 1 year previously completed semistructured qualitative interviews designed to elicit expectations and experiences of QOL following PE. Thematic analysis was used to code transcripts for both a priori and emergent themes.
Results
Themes included PE versus palliative care, preparedness, persistent symptoms, the not so normal new normal, new rules of social engagement, support, emotional diversity, and bouncing back through adaptive coping. Key differences with previous studies include the explicit acknowledgement of the need for palliative care, the chronic nature of multiple, seemingly unaddressed physical symptoms in survivorship, and the predominance of positive psychological symptoms. While a minority expressed emotional distress and regret for undergoing PE, most articulated a sense of resilience gained through a variety of adaptive coping strategies.
Conclusions
Findings underscore the persistent physical, psychological, and social effects of PE on QOL and the need for comprehensive, multidisciplinary patient care before and long after surgery. Findings should promote development of a best practice clinical pathway for the care and education of women who undergo PE with curative intent for gynecologic cancer.

CONFLICT OF INTEREST
None of the authors have financial disclosures or conflicts to report.

 

[mayday mayday]

I know a lot of people will disagree with me, but I won't judge Matt poorly if he doesn't stick around. Of course I would feel awful for Tiffany and it's crappy for someone to walk away from another with cancer. But we aren't talking about a couple that's been married for years and made that commitment. We have no idea if their relationship would have lasted without cancer ///
Quite frankly it would be better for him to leave than stay and end up being bitter.

There's videos of her staring at him with sad puppy dog eyes when he's leaving for work, another time he was out all day enjoying one of his sports hobbies - when he finally came home she said something to him like -- you can't be gone all day. Sadly I think that if he leaves she will crumble and fall into an even deeper depression. I really think her survival depends on him sticking around.

 

[Turaj]

There's videos of her staring at him with sad puppy dog eyes when he's leaving for work, another time he was out all day enjoying one of his sports hobbies - when he finally came home she said something to him like -- you can't be gone all day. Sadly I think that if he leaves she will crumble and fall into an even deeper depression. I really think her survival depends on him sticking around.

that is a lot of pressure for a young guy like him. Not sure he is up to the task. he still talks about the surgery like it is a maybe they do it and if so take it out and voila....GONE. That is not the way it goes at all. Natalie Woodward met her husband (or partner) between diagnosis and surgery so he knew what the story was going in. Matt did not...they don't have that long of a relationship before diagnosis ..maybe about one year. I will take a very special partner to go thru the next year with Tiffany. We will see.

 

[suzeq]

If they had done the surgery back in September, as they had planned, Tiffany would have had to face it all then. She might have been a little more in the mindset to go through with it? I feel like the “Wait and Watch”approach really messed with her head, because it gave her a little bit of hope, and she began to think maybe she wouldn’t need this surgery at all. I remember in the “No Surgery?!” video, she said that Option 1 was to have the surgery right away. Option 2 was wait and check everything again in 6 weeks. I think poor Tiffany got herself in the mindset that they would say nothing has changed in those 6-8 weeks and she wouldn’t need surgery at all. That little glimmer of hope has made it that much more devastating for Tiffany. (I have always been afraid to ever get my hopes up for that reason). I really hope Tiffany gets the professional help to get through this psychologically and emotionally.

I agree, I think she was better prepared to have surgery then, whereas this WW gave her optimism and hope that ultimately let her down with even worse results. She's had to come down hard from a greater high point.

I agree, while I don't think she completely bought into an idea of being "cancer free" (otherwise she'd have been yelling it from the rooftops and dancing around naked doing her boomerang dance), I do think she jumped at the opportunity to think the best, delay a decision on major surgery and hope these later results would confirm the positive findings last time. I mean, who could blame her when faced with such an irreversible major surgery and drastic change to her body, I think I might have wanted to hang onto that hope too and think I would have felt reassured if both my surgeon and oncologist were accepting of a deferral, too.

The worry I see is that if Tiffany did have the surgery 8 weeks ago, on her next scan it would have shown thickening in the colon further up? It's spreading further up from where the surgery was planned?

Yes, it IS also possible that they wouldn't have removed what might have been a cancerous colon area that this new scan has now revealed if they'd operated 10 weeks ago. Of course, no one knows what the thickening is yet. Depending on how this plays out, the wait might have benefitted her in that they are more aware of this new suspicious area and can examine it on EUA or intraoperatively if needed. That's assuming it wouldn't have ever grown into a problem at all with an earlier surgery, one just never knows when it started, or, at the moment, what it is.

I(t) will take a very special partner to go thru the next year with Tiffany. We will see.

He didn't hesitate to move in with her immediately to help in all manners upon diagnosis. He could have slowly faded away, been busy, etc. Instead, he jumped all in.

 

[laufitz111]

TPN at home is not practical. Patients are prescribed these. Tiffany was prescribed them but stopped them. The 'milkshake' she keeps mentioning is fortisip. https://www.fortisipdrink.co.uk/
Again, weight gain is part of prehab,its not a surgery requirement.

Actually I'm on TPN at home for the past 9 years so it is very possible. I'm trained to do it myself but for patients like Tiffany who require it short term they can arrange nurses to come to the house to connect and disconnect. I really think nutrition directly into the bloodstream and avoiding the GI tract completely would be of enormous benefit.

 

[Grow-a-Pear]

She mentioned her biggest fear is of recurrence. She will have already been told about the risk of recurrence. Surgeons have to tell their patients the risks.

When did she say that? In the latest video she says her biggest fear is they'll do the surgery and then tell her, "I'm sorry we couldn't remove it all and that's there still cancer in your body, or there's still a tumor in your body. I think that's my biggest fear."

I haven't heard her mention recurrence lately if ever but I could have missed it. She's really big on thinking once the surgery is done, if she gets to NED that somehow that's the equivalent of "cancer free" and she can do her cancer-free boomerang.

 

[Daisychain4]

I know a lot of people will disagree with me, but I won't judge Matt poorly if he doesn't stick around. Of course I would feel awful for Tiffany and it's crappy for someone to walk away from another with cancer. But we aren't talking about a couple that's been married for years and made that commitment. We have no idea if their relationship would have lasted without cancer and they weren't together that long before the diagnosis. I grew up with a disabled mother and my father was her caregiver (and had a job). It was rough, both physically and mentally. He rarely complained but I saw the toll it took on him. If someone isn't up to that, they shouldn't be obligated to stick around. As far as sex...that IS an important part of the relationship- whether the man is old or young.
Quite frankly it would be better for him to leave than stay and end up being bitter.

Hmmm … such a personal and sensitive conundrum.
As a mother of sons who are such beautiful young men just starting their adult lives and planning their futures around marriage, mortgages and families … I really find this a difficult area to think about.
My husband and I have always included our sons in any important decisions throughout our lives and have encouraged a very open and transparent family unit.
If my sons … any of them, should ever come to us as their parent, support or confidant to seek comfort and/ or counsel or even just a listening ear in the exact position that Matt finds himself in at this time … how as a parent to the partner of Tiffany, would you feel?
And what thought process would you adopt to ensure you were protecting the mental health perspective of your child?
As a mother of sons, I truly feel for Matt and the thought process he himself must be going through. Certainly not easy and certainly very emotional from all perspectives, even as parents of the partner. (I know he is a space cadet, but he is also a person with need and it would be very hard for him, all things considered)
I would understand and support any decision the partner of such a case came to, for he too, is a victim of circumstance and needs strong positive support.
If that decision was to walk away at some point, I would support the decision if that was my son.
Just my thoughts and opinion.

 

[Leofeldhas]

When did she say that? In the latest video she says her biggest fear is they'll do the surgery and then tell her, "I'm sorry we couldn't remove it all and that's there still cancer in your body, or there's still a tumor in your body. I think that's my biggest fear."

I haven't heard her mention recurrence lately if ever but I could have missed it. She's really big on thinking once the surgery is done, if she gets to NED that somehow that's the equivalent of "cancer free" and she can do her cancer-free boomerang.

what´s a "cancer-free boomerang" ?

 

[Turaj]

Actually I'm on TPN at home for the past 9 years so it is very possible. I'm trained to do it myself but for patients like Tiffany who require it short term they can arrange nurses to come to the house to connect and disconnect. I really think nutrition directly into the bloodstream and avoiding the GI tract completely would be of enormous benefit.

sure seems to make sense to me.

When did she say that? In the latest video she says her biggest fear is they'll do the surgery and then tell her, "I'm sorry we couldn't remove it all and that's there still cancer in your body, or there's still a tumor in your body. I think that's my biggest fear."

I haven't heard her mention recurrence lately if ever but I could have missed it. She's really big on thinking once the surgery is done, if she gets to NED that somehow that's the equivalent of "cancer free" and she can do her cancer-free boomerang.

when you have cancer and have surgery or treatment etc. and are told NED that is cause for celebration....if that means her cancer free boomerang by all means she should do it. You have to celebrate the victories.

 

[BCrowl]

what´s a "cancer-free boomerang" ?

I’m not exactly sure, but I think it’s a dance? Tiffany used to point out a certain spot on the hospital lawn, and she would say this was where she was going to do her “cancer-free boomerang.” Basically it’s like a little cheer and she would say, “I’m cancer-free, I’m cancer free!”

 

[Grow-a-Pear]

what´s a "cancer-free boomerang" ?

She's talked repeatedly about going to a certain spot right outside the front of the hospital, saying "I'm cancer free. I'm cancer free" and recording it. A boomerang is a short video style that she uses a lot on Instagram and Tik-Tok where the video plays forward and backward. I don't remember if she wants to dance along with it or what. Someone else might remember.

 

[Turaj]

Here is US we have a "bell" that you ring when you are finished with treatment ie chemo or radiation. I never thought I would do it but then I just rang it as you are so glad to be DONE.

 

[Grow-a-Pear]

when you have cancer and have surgery or treatment etc. and are told NED that is cause for celebration....if that means her cancer free boomerang by all means she should do it. You have to celebrate the victories.

I'm 100% for celebrating the victories, but I am a realist. Celebrate the surgery being behind you. Celebrate that you are alive. Celebrate being NED. Dance and yell and cheer and make boomerang clips

It's her use of "cancer-free" that is a continuation of her unrealistic thinking. She may still have cancer floating around in her body after the surgery, and I haven't seen that she understands the difference between cancer-free and NED. Especially with her saying in the Sunday video that she'd be looking forward to being done with all the scans after surgery (as if she won't need periodic scans for years) and Matt acting perpetually like if she gets the surgery she's all done with everything.

 

[mayday mayday]

Here's a bit of medical trivia -- an even worse procedure than the PE exists - it's called a hemicorporectomy. Basically it's a PE but both legs are removed as well; there are less than 100 known cases in the medical literature. Wonder how many times it's actually been offered ..

 

[Sheba]

I think that "and then I will be done" and "just a little farther" are things she says to psych herself up to keep going, not actual expectations...

Here's a bit of medical trivia -- an even worse procedure than the PE exists - it's called a hemicorporectomy. Basically it's a PE but both legs are removed as well; there are less than 100 known cases in the medical literature. Wonder how many times it's actually been offered ..

holy wow! I am off to Google.

 

[Ionia]

Video from 8 years ago. At 2:40 of the video one can see how extremely skinny Tiffany has been since always and now with cancer even worse as expected. She has mentioned many times in various videos she cannot understand why she eats and cannot gain weight. Someone mentioned here that Tamil woman are petite and her image is normal. Sorry petite does not mean skinny and no, her image did not represent the typical Tamil woman as you can see in the video. Something was wrong with this girl but only she knows the reason.

I think that "and then I will be done" and "just a little farther" are things she says to psych herself up to keep going, not actual expectations...



holy wow! I am off to Google.

There is a youtube channel of a young American boy who had a working accident at 19 and had that rare and extreme surgery in order to live. He and his girlfriend got married after the surgery and that girl stands like an angel supporting her husband with half a body. Amazing.

I am watching Natalie Woodward interview right now....I hope Tiffany considers finding things like this. Wow so inspirational. She has a "Mission to Remission" Instagram Blog. She mentioned "Maggies Place" where she met people with this same cancer etc. Tiffany needs some human interaction in person with people that can really understand her.

Woodward’s cancer metastized to the liver? She posted that on Twitter in July.

 

[Emanuela]

I think the biopsy will be Friday (day after tomorrow), not the pelvic exenteration...
for the latter you need the whole team and she was told to put on some weight first.
Somewhere she mentioned surgery is scheduled to take place mid-December if I´m not mistaken

The way I understood it was that the biopsy will be on A Friday, and the surgery on A Wednesday following THAT Friday, the week wasn't specified. I guess he does these procedures on specific weekdays.

 

[ginnyw]

I finally watched the vlog and thought it was the best one I've seen to date because it was totally about her challenge of cancer and no silly fluffy stuff. It was raw and emotional and honest and there was no front or deception, just facts and fear. I really do feel for her as this is majorly scary and daunting stuff for anybody, let alone a woman who is only 30. Just the factor of never being able to carry a child is devastating, before you add in all the other risks and difficulties. There are some nice comments on YT (apart from the inevitable loony ones) but I still feel that many of her followers are blind to the realities of what Tiffany is about to face. On here there is a lot of sympathy which imo is far more balanced imo - people looking at the whole picture.