The transcript says Wendy and that's the name I first heard when I watched it. An odd mistake for sure, but she must mean Winnie.
It reminds me of women in films when they wake up and their make up and hair is perfect.
I just went back and listened with headphones, you are right, it is Winnie. I was listening with the subs on before, and heard what I was reading. Sorry!
Amazingly Sarah POG Family acts less ill than Jenny and they gave her a month to live without treatment.I think this video is def the worst that I have seen Kyle & Jenny put out.
At this stage I am not sure I would want a spouse to go through more treatment which may help, but likely won't.
Jenny is either highly medicated or declining quickly. Seeing her laid on the couch towards the end of the video? The amount of times she says "i'm tired", she literally cant do anything for herself anymore
We learnt that Jenny went for an eye test and managed to have some scans & tests.
I don't think Jenny will be with us very long.
As much as I have followed Jenny for such a long time, I now feel its time for me to stop watching. I feel like I am seeing things which I don't think should be made public.
I do agree that Jenny appears to report symptom after symptom which must make it hard for oncologists who are hoping to offer treatment/extend life, while maintaining QUALITY of life.
Jenny is in treatment groups where fellow members are plodding along fine one day, and the next their relatives/friends are posting to say they have passed away. It's scary for fellow patients, especially when they make bonds with patients in the same situation And her RCC consultant Dr Kate Fife told her that she was not alone.
I was taken aback on how long Kyle taped Jenny laying on the couch eyes shut and in discomfort. There was no need for that. That certainly was not for their children to see.I think this video is def the worst that I have seen Kyle & Jenny put out.
At this stage I am not sure I would want a spouse to go through more treatment which may help, but likely won't.
Jenny is either highly medicated or declining quickly. Seeing her laid on the couch towards the end of the video? The amount of times she says "i'm tired", she literally cant do anything for herself anymore
We learnt that Jenny went for an eye test and managed to have some scans & tests.
I don't think Jenny will be with us very long.
As much as I have followed Jenny for such a long time, I now feel its time for me to stop watching. I feel like I am seeing things which I don't think should be made public.
It really isn't amazing though is it?
She experienced nerve damage after her first draining, and thats clearly evident now with them having to use 'clot bluster' to break up the loculated tissue.
I have scanxiety every 3 mos when I have my CT for my colon cancer and even after 7 years after my breast cancer diagnosis I still am worried about mammograms.I do agree that Jenny appears to report symptom after symptom which must make it hard for oncologists who are hoping to offer treatment/extend life, while maintaining QUALITY of life.
I know many see Jenny as making a big deal out of tests, scans, and treatment and that her anxiety is extremely off the scale. I agree to some degree, but I understand her
Additionally, scan results are scary for most patients, even patients that are NED.
With Jenny basically being a palliative treatment patient (none of the treatments have curative intent), scans can be petrifying experiences.
I know of a young woman under Addenbrookes Hospital UK. She was unfortunately diagnosed with stage 4 RCC (Kidney cancer) with sarcomatoid differentiation (SRCC). Scans and results would petrify her so much that she couldn't attend face-to-face clinic! She attended when she was diagnosed face to face and completely mentally broke down. After that she went for CT scans but would always receive results via Zoom in the comfort of her own home. She managed scans and bloodwork at the hospital, but all TKI treatment was delivered by Boots to her home and all consultations took place by zoom. Fear paralyzed her throughout her journey
Jenny has previously had therapy which doesn't appear to have made any difference. I feel very sorry for Jenny. She see's her 2 babies daily and goes to sleep not knowing when they will become motherless. It's terrible.
Wouldn't CoH know if there are any proven treatments even if private?It really isn't amazing though is it?
We have to remember that all cancers act different?
Sarah has been very lucky to have a great response to high dose steroids and whole brain radiation. I haven't closely followed the POG family channel but the impression I get is that Sarah's only really been affected by her disease recently? Forgive me if I am wrong.
Jenny's got brain mets but they haven't ever affected her.
Jennys main problem is the fluid and its always been the problem for her. When it spread to the pleural lung lining its caused nothing but problems for her
I hope for a miracle also, of course I do, but I can't see it happening. Trial treatments are still palliative treatments. Trial treatment may stabilise disease for a few months/couple of years. Stable wouldn't benefit Jenny because she would remain as she is current day. Laid on a coach, having to sleep in crazy positions, feeling tired etc.
Trial treatment may not work at all and disease could spread fast.
Or trial treatment may shrink and dry up Jennys fluid. Its such a gamble.
If I was Kyle I wouldn't be looking at trials. I would ask if there any approved treatments for Jennys mutation (even if that meant paying privately for them and raising the money). Proven treatments could be better.
Me too. I'd say well yes its def not for her children to see, but the fact is that her children already see Jenny like this because they live with herI was taken aback on how long Kyle taped Jenny laying on the couch eyes shut and in discomfort. There was no need for that. That certainly was not for their children to see.
Pain tolerance is unique to each individual. I don’t feel you should judge one vs the other without knowing the details of each situation imo.
So sorry that you go through the quarterly scan anxiety
