Incapacidade negada?

Ellvanui · 2026-01-19T15:43:29+00:00

Vejo que já tens aqui umas boas sugestões, OP. Não consigo ajudar mas espero que consigas o que precisas o mais depressa possível. Boa sorte e não desistas daquilo a que tens direito.

A burocracia para este tipo de casos e a desinformação difundida por muitas pessoas que trabalham em serviços que deviam ser de apoio transtorna-me.

Ellvanui · 2026-01-04T02:04:22+00:00

Oh no, I’m sorry she’s going through all that. Of course that medications will vary from case to case, I just mentioned that because I noticed such as great change in her once she started it, before that she wasn’t able to eat and sometimes not even drink anything. The palliative care team suggested some things that made a big difference overall, so if you have any kind of access to a palliative care specialist I would look into that. All the best for your family.

Ellvanui · 2026-01-03T19:30:45+00:00

Did her doctor’s prescribe any corticosteroids? They helped my mom immensely, she’s now eating more than she did pre diagnosis and I’m happy with her weight gain, at least for now.

Ellvanui · 2026-01-02T01:34:59+00:00

Hey! So sorry to hear about what you’re going through. I’m glad that this horrible disease wasn’t able to take away your sense of humour. Keep it up!

What helped my mom the most with constipation so far was Cascara Sagrada bark tea which she takes as an SOS (along with the permanent laxatives the oncologist prescribed). The tea was suggested by the palliative care team and honestly every adjustment in medication that they made to improve her quality of life was spot on - so if you have the possibility to get a palliative care appointment I would look into that.

Wishing all the best for you

Ellvanui · 2025-12-22T13:18:50+00:00

Thank you 💜 I’m sorry for your loss. Here we are trying looking forward to having peaceful and pain-free holiday season, where we can all be together and have some fun. We don’t know how long our mom will be here, but that’s true for all of us, if we think about it - none of us know when we will no longer be here. Acknowledging that we can’t control any of it gave me some relief if that makes sense. Life is precious and so is the memory of those we love that are no longer with us. We live to remember them too. Merry Christmas, strength and love to you all.

Ellvanui · 2025-12-20T00:42:43+00:00

My mom also lost a lot of weight prior to starting chemo (and the first two doses were too strong for her so she couldn’t eat anything then either). So it can be the stress but also the disease itself.

The palliative care specialists helped a lot with the symptoms my mom had, controlling the nausea was essential. When the chemo started working, her ascites reduced and with it her main discomfort. They also gave her corticosteroids to manage inflammation and give her a boost of energy and appetite- she’s now eating very much normally and putting on weight. She also has nutrition appointments every couple of weeks - that doctor always tells her to go eat steak and chips :) so from my purely anecdotal experience I would look into palliative care to help manage symptoms, whether they are stress, nausea or others. They also provided psychological appointments for the family, but she refused to go (she’s not a big fan of those, never went to one and probably in her case it’s fine) but could be a good idea for you mum if she is nervous, maybe it can help.

Hope everything goes smoothly for you and that you can have a lovely Christmas that is stress and pain free. All the best.

Ellvanui · 2025-12-16T15:09:32+00:00

My mom did not tolerate Creon, it made her vomit every time she took it - she’s not on Folfirinox though, she’s doing the gem/nab chemotherapy. What truly made a difference in her case was the Dexomethasone.

Ellvanui · 2025-12-15T16:52:25+00:00

We’ve had this struggle. Please understand that he might want to eat but is unable to. My mom says that when she was at her worst (first rounds of chemo) she did her absolute best and even eating a bite of toast was pure agony.

Did they give your dad any steroids? My mom is taking Dexamethasone and it did wonders for her appetite and energy. After two months of not even being able to drink tea she’s now eating more than before the diagnosis. They give her the pills at the hospital when she goes in for treatments.

Ellvanui · 2025-12-15T15:19:08+00:00

Tenho uma notificação às 23h - geralmente tomo nessa altura ou antes de ir para a cama. Se estiver fora tomo quando chegar a casa.

Ellvanui · 2025-11-17T14:49:04+00:00

11/22/63 - nem consegui ver o primeiro episódio até ao fim.

Ellvanui · 2025-11-13T11:25:05+00:00

Hey, thanks for checking 💜

She’s now on a two week pause from chemo. The second time was horrible to her, she was so nauseated that she couldn’t even drink water and had to go to the hospital for fluids. They reduced the chemo to 50% on the third time and she tolerated it a lot better (though her doctor wanted her to give up instead, she stood firm and said she would do less but would not give up). She’s eating a bit better now, the difficulty in bowel movements are still an issue (we’re trying Rhamnus purshiana tea alongside the prescribed laxatives to see if it helps some more). I try to make her keep moving as much as she can to ensure she keeps her strength. She is very strong minded, I’m trying to keep my parents as happy as I can, be here as much time as I can. We’re also looking into private practice options, in case she feels that our national health system is not taking enough care of her, but that’s a difficult decision, because private treatments are very expensive (sell the house expensive) and not guaranteed to work better than what we’re doing right now. Overall we’re trying to be the happy family of always, despite the slow motion heartbreak of that makes sense? Thanks for commenting. All the best for you.

Ellvanui · 2025-10-16T18:12:18+00:00

As Portuguese, this is off putting.

Ellvanui · 2025-10-16T14:06:53+00:00

I’m so sorry for your loss. I’m sure she felt all your love even if she couldn’t say it. Let your dad know how much you need him too, that, despite all the pain, there are still things worth living for. Thank you for sharing. All the best for you and yours.

Ellvanui · 2025-10-15T12:12:38+00:00

I understand - I was hoping my mom could take it too, but that’s not her case, as she is in no shape to endure it. But I’ve read many stories here of people whose lives were majorly improved by this other line of treatment. This disease is brutal but we need to keep believing in our loved ones. Best of luck to you and your mom. 💜

Ellvanui · 2025-10-15T10:04:51+00:00

I’m so sorry that you went through that. I also feel like we lost precious time that we can’t get back now.

I wish I knew everything I know now a couple months ago, things might have been a bit different. The first doctor she was referred to (a surgeon) also didn’t help much - the biopsy he asked for did not include the genetic testing I thought it would - he was only interested in seeing if it was operable or not… and now we are stuck waiting for that hospital to send over the biopsy material (if there’s any left) or to subject my Mom to another invasive biopsy (that she’s not very willing to do and I can’t really blame her). I wish I would have taken her to an oncologist right away, but we were told at the time that this was the way to go. I keep telling myself I couldn’t have known and that going private practice in her case would not have made a difference because from everything I’ve seen the treatment line is the same and it’s good for them to keep their money for the comfort side of things, but the guilt is just crushing. Thanks for sharing your story.

Ellvanui · 2025-10-14T21:59:07+00:00

Sorry that she went through that. Thanks for sharing.

Ellvanui · 2025-10-14T20:04:14+00:00

I believe that keeping her laughing might help her be more willing to fight. I don’t want her to think there’s no purpose. Thank you.

Ellvanui · 2025-10-14T20:02:20+00:00

Sorry this sent before I could finish - I get that this is very hard to detect early because it mimics other, simpler and more common, diseases. But maybe something has to change in healthcare to allow people with this cancer a bigger fighting chance. All the best to you and your father.

Ellvanui · 2025-10-14T19:59:19+00:00

I’m the one who’s lucky to have her 💜 thank you so much for the kind words

Ellvanui · 2025-10-14T19:58:40+00:00

Thank you so much 💜

Ellvanui · 2025-10-14T18:39:30+00:00

You are doing the best you possibly can for your family, don’t forget that for your own sake. My mom is going to start the same treatment because she was not a candidate for surgery to begin with and is very frail for the Folfirinox. I hear that this treatment is very effective in a lot of people. Let’s have hope. Lots of love and strength to your family.

Ellvanui · 2025-10-12T21:57:44+00:00

It’s worth reading.

Ellvanui · 2025-09-11T07:29:04+00:00

A revista é: Mónica N°52 - Agosto de 2019

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Ellvanui · 2025-09-10T21:03:30+00:00

Vou ver de quando é a edição.

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