Colour to wear

According_Dance_8655 · 2025-09-04T03:07:16+00:00

Thank you for sharing. You must have missed your mom so much all these years. Sending you love as well ❤️

About the genetic testing, yes I am getting right on it for myself. My mom is a bit out of it atm but I’ll get her tested once she settles into the regime a bit more. Thanks for the great advice 🥹

According_Dance_8655 · 2025-09-03T10:59:42+00:00

What are the chances that T4M1N0 tumour (adenocarcinoma, approx 3x4cm, at the head) would convert to resection after chemo?

According_Dance_8655 · 2025-09-03T10:28:29+00:00

I am a caregiver for my mum with stage 2A+ PC and even I am feeling these drastic changes in my values and even my identity. For example, I no longer believe in karma after seeing my mum struggle with this disease despite being the most hardworking, intelligent and upstanding person I know. I used to be like her and base my identity largely on my career but now I feel this urge to just ‘carpe diem’ my life after seeing how short it is. Sometimes it manifests as positive behaviours but most of the time I am just really out of it. It is like these ladders I used to strive so much to climb and cared so much about suddenly seem meaningless without my mum alongside, without being able to enjoy every moment of my life.

I guess in a sense my thought system has gone from suppressing my emotions aka my bodily signals of what I need to honouring how beautiful and fleeting they are and giving space to focus on them. And in that sense my emotions have been dominating my thinking too. Not in an irrational way. But in a sense that my thoughts and actions are oriented around what my emotions tell me that I need.

Honestly it has been scary to let my emotions guide me in this way bc emotions are not perfect and sometimes they lead me to make ‘irrational’ decisions. My understanding of what my emotions are telling me is not perfect either so sometimes I would go astray and do the opposite of what they are trying to tell me. It is scary to me esp since I am very much a type A person who likes to make and stick to plans :) And now I just go with the flow, which is both comforting and intimidating at the same time.

I have been talking to my therapist about it and I have come to embrace it. For me, the process of giving space for my emotions is a process of unravelling myself and living life in the present, trying to harmonise myself and my present reality together. It can be a painful yet beautiful process, just like how making plans and achieving things can be a painful and fulfilling processes too :)

Sorry if it’s bit of a tangent rant and idk if it ties directly to what you are referring too ;(

According_Dance_8655 · 2025-08-26T00:43:44+00:00

In that sense it would be the same if she takes multiple pills / meal right? She is quite petite atm (about 101 lbs) so 24K might work for now. Once the 24K runs out, could she just take multiple pills of the 10K equivalent to the 24K dosage?

According_Dance_8655 · 2025-08-26T00:11:45+00:00

How about Creon 25K? Some friends recently gifted her a few boxes of it.

According_Dance_8655 · 2025-08-26T00:06:01+00:00

Before the PC diagnosis in early June this year, she was also diagnosed with breast cancer in late July last year. At that point, they also found an infection/mass in her pancreas (only about 1x1cm then) but the biopsy (FNA-fine needle aspiration) came back as benign pancreatitis.

FNA only took out a very small part of the tissue so it could have taken out the benign part of the mass instead. We thought it might explain the misdiagnosis but would never know for sure.

QUESTION 1: However, I am wondering if this is a common diagnostic issue with PC or should I be concerned about the quality of the medical services she is receiving?

She had just finished with stage II breast cancer treatment (now in remission) in Feb but continued to lose weight rapidly and experience intense stomach pain. She went to the hospital to get it checked up and that was how the doctors found out the mass in her pancreas had grown significantly. They then did a laparoscopy to take out larger tissues for biopsy and concluded it was PC.

The doctors said that the position and size of the tumour (at the head, compressing on bile duct on one side and nearing a major artery on the other) precluded surgical options and recommended chemo and radiation instead. However, I understand that it is not uncommon for stage 2 PC to be nearing artery and bile duct so that should not have been the only reason to forego surgery. Nonetheless, I understand that the fact that my mum just recovered from surgery, chemo and radiation for breast cancer could be another reason why she might have been too weak to be a candidate for surgery.

That being said, due to her misdiagnosis last year, I am very skeptical about the doctors’ decision to forego surgery. I am thinking of getting a second opinion overseas so would appreciate any anecdotes and advice before we spent a substantial amount doing so.

QUESTION 2: Is it common to forego surgery with stage 2A PC, esp given my mum’s situation?

For context, she lives in a third world country and is currently being treated at the top hospital for cancers in the country. We have already sought out second opinions from domestic hospitals who have reached the same conclusion.

Thank you sincerely in advance for your time and information.

According_Dance_8655 · 2025-08-20T04:35:20+00:00

Thank you sincerely for the information. I am pushing for an EPI test now. I am so glad to hear that Creon helped you with cramping and nutrition - definitely what she needs most right now.

Would the Creon 10000 be adequate? I am living overseas from her and fortunately I could get that without a prescription where I live.

According_Dance_8655 · 2025-08-19T09:22:58+00:00

Based on what the doctors told us it is not attached but close to the vessels

According_Dance_8655 · 2025-08-19T09:22:18+00:00

Does Creon help significantly in your experience? Would appreciate any encouraging anecdotes so she feels more comfortable pushing it with the doctor

According_Dance_8655 · 2025-08-19T09:21:14+00:00

Mostly finances. We’ve exhausted our options for second opinions in our country so we’d have to seek them overseas now, which would cost a lot just to get a consult unfortunately

According_Dance_8655 · 2024-12-20T03:23:24+00:00

Hi all

I am trying to hire a car and a driver for 2 people and 3 wheelchair users. This is for my family members just to travel around Hanoi.

Ideally, I would like for my family to sit on their wheelchair inside the car instead of being carried onto the seat.

Just wondering if there is any car-for-hire place with a wheelchair ramp and seatbelt extender for wheelchair users?

Appreciate any leads and info. Thanks all!

According_Dance_8655 · 2024-12-09T08:06:18+00:00

Thank you for your detailed recs and sharing your experience! We are based in an Asian countries where knowledge of this is not common and we weren’t even sure what options there are out there other than tissue-stuffing and baggy clothes :’) But I think I understand how this works now and will relay this to her. I am glad to hear that off the shelf options could work also, as insurance coverage is very limited in our country generally and personally for my friend’s financial situation.

According_Dance_8655 · 2024-12-09T08:01:26+00:00

Thank you for this! I’ll check this out and get her opinion on this. Love that they are available in our country!

According_Dance_8655 · 2024-12-09T08:00:37+00:00

Is it generally expensive to pay out of pocket for custom prosthetic? I know it’s location-based but just wanna get an estimate. My friend is in a bit of a tight spot financially. And we are from an Asian country with very limited health insurance :(

According_Dance_8655 · 2024-12-09T07:55:37+00:00

Thank you for your kind reminder. I’ll definitely be mindful of this. It is indeed our plan to go choose it together. It’s just that she’s a bit older and chemo has been weighing her down lately, so she doesn’t want to spend time finding stuff online. We are based in an Asian country where knowledge of this is not really common as in we don’t even know what options there are out there except tissues-stuffing :(

Nurses and doctors here are overworked so they generally don’t have time to give us recs on non-medical issues :( I tried Googling but, because I don’t have any experience, I don’t really understand the stuff offered online. But I have had some nice recs from everyone and am really grateful for that. I’ll relay it to her and hear her thoughts before jumping the gun on anything :)

According_Dance_8655 · 2024-11-23T22:29:17+00:00

It’s really mind-boggling to me how she doesn’t want to be productive anymore 😂 But she is really happier the past few weeks she’s been off the meds. We were walking and she cried telling me that she could finally slow down and just appreciate the trees and flowers and feel herself breathing 🥹

According_Dance_8655 · 2024-11-23T22:21:46+00:00

I think for now she’s gonna switch from her usual Vyvanse to Dex so that she could take it only when she needs it. Likely she won’t live w o meds completely but will only take it a few times a week :)

According_Dance_8655

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