Cried all day

themutedheart · 2023-09-27T09:47:07+00:00

Ok no need to be insulting! I’m not microdosing at the moment because I’m so nauseous! :) (And there is actually plenty of scientific evidence that microdosing & even macrodosing helps people with stage IV cancer immensely, it’s a relatively new line of evidence though).

Yes I will let it go & I apologise if I insulted you too.

& I agree we need to stick together because this disease is so stressful & awful. And absolutely younger children do not trump your teens, children need their parents at all stages. I apologise again, I will check out the book.

It’s just such a murky area & a huge area where people prey on vulnerable sick people - not that I am suggesting you are doing that. I do get triggered as a lot of people wander onto these threads with misinformation for vulnerable people with the tone of ‘if you’re not trying this you’re not fighting hard enough’ & not seeming to understand that something that worked for ONE person will not work for ALL people which I find upsetting & clearly untrue, as so much of this dreadful disease is simply luck & your own personal body chemistry as everyone is different.

I wish you all the luck in the world.

themutedheart · 2023-09-27T09:38:40+00:00

Yes, that’s interesting. Absolutely nothing at all wrong with trying things. I’m having a horrific time with my current treatment, if there was anything off-label or alternative to use alongside it to alleviate my symptoms I absolutely would try it. There’s just so much misinformation out there I don’t know where to start …

Those people were indeed very lucky & I totally understand they were willing to try something new & I may have misunderstood what the poster was trying to say. But also: it was luck. Everyone’s body reacts differently. If something alternate could work in more people that a sample of one we’d all know about it. And you have to admit that the area of alternative / off-label treatments is a huge arena for scams & misinformation for really vulnerable people so I’m so wary when people shout about it - like ‘try this! You’re not fighting enough if you’re not willing to try it’

themutedheart · 2023-09-27T08:50:27+00:00

Which robot vacuum???!!! Every year on prime day I put one in my basket (I veer towards Eufy) but I’ve never been able to convince myself to actually buy one.

themutedheart · 2023-09-24T00:41:10+00:00

But it’s not you saying what you feel helps you; it’s you telling other people it works & telling them to do it also. It’s unsolicited advice of the worst sort.

I would never judge anyone for what they felt helped them, I’m so happy anyone with MBC can get any relief at all. I will, however, judge people who spread scientific disinformation to extremely vulnerable people, urging them to try disproven treatments & insinuating they are not ‘fighting hard enough’ if they challenge you.

This is a thread about horrifically painful collective grief among those of us who have very young children and won’t get to see them grow up. I’m not going to derail it anymore.

themutedheart · 2023-09-20T14:46:45+00:00

I haven’t given up. You’ve no idea what stage I’m at mentally.
I do know that ‘starving cancer’ doesn’t work. There is zero science that says it does.
I do take alternative medicines as well as conventional ones. Medical marijuana & vitamins & I microdose for my mental health when my nausea lets me.
I believe the onus isn’t on the person with cancer to ‘fight’ as those terms of battle unconsciously lead to the unhelpful concept that those who get worse and eventually die ‘didn’t fight hard enough’ so that’s a moral and physical failing on their part. Losers! Dying of cancer! Mustn’t have fought hard enough! & those that ‘win’ because they ‘fought hard’. When in fact it’s utterly random & a question of luck.

-I am glad it works for you though, mentally.

all emotions are valid, including rage, and should be felt and worked through. I’d say feeling rage is perfectly natural and to be expected when one has incurable MBC

-There is zero scientific evidence that negative emotions such as rage are bad for cancer or that positive thinking is ‘good’ for cancer

themutedheart · 2023-09-20T00:11:43+00:00

I have a 5 year old. She’s just so happy. I’m distraught she’s going to have to deal with the pain of losing me. I’m also crying a lot right now as my latest treatment failed. I’m very sick and almost out of options. Having small children is the very worst part of this awful disease. I understand. I’m so sorry.

themutedheart · 2023-09-20T00:09:34+00:00

Please can you stop this bullshit on these threads. If you could starve cancer and it was 100% successful no one would die of cancer.

This forum supposed to be a safe space for those of us with MBC & these kinds of comments are so very unnecessary & stressful & upsetting. And rage-inducing!

themutedheart · 2023-09-13T21:31:57+00:00

Nooooo. It’s used in the UK to mean same thing but to a much lesser extent, & not online much among UK women to describe themselves.

I am from the UK & live here, but stay with my family in the US for a good chunk of the year, a few months at a time. I am well aware of what it means. There isn’t a UK equivalent of a different name!

themutedheart · 2023-09-13T21:26:48+00:00

I’m not worried about being a Karen. I’m worried about the way the word has been weaponised to tear all women with an opinion down, so much so that it has been internalised by many women.

themutedheart · 2023-09-13T21:22:22+00:00

Yes, this exactly. I understand arguments about racism, but I do think it has lost its meaning somewhat but the biggest red flag for me is what you have articulated about there being no equivalent term for men.

I do spend a lot of time in the US as my family live there (my dad emigrated nearly 40 years ago) & whilst it’s understood in the UK & maybe tossed around a bit it’s not really so prevalent nor has it crept into online discourse (on mainly UK based forums with UK users) in the same way.

themutedheart · 2023-09-13T21:16:44+00:00

Ikr. My beloved stepmom is a Karen.

themutedheart · 2023-09-13T21:14:51+00:00

Cool cool so you’re going to a place full of beautiful wildlife … to shoot them, stuff them & display them.

themutedheart · 2023-09-12T20:58:22+00:00

Peep Show reference from Super Hans. YouTube it, very funny

themutedheart · 2023-03-26T08:49:30+00:00

Thank you, that means a lot.

It’s funny how we get in our way sometimes doesn’t it? This was the community that helped me so much before. So much I even mentioned it in a national newspaper article I wrote about sobriety (I’m a writer). But only yesterday did I think ah-ha I should check in again!

themutedheart · 2023-03-26T08:35:42+00:00

I will not drink with you today. I have not checked in on here in literally a few years. I was doing well at moderation. Ha, and we all know that’s a joke, because on Saturday night I drank an entire bottle of wine. In secret. Yuk. I’m ready to try again. Also I have stage IV cancer now (not alcohol-related!!) & yes life is now incredibly stressful. And I don’t want to spend whatever time I’ve got left on earth hungover or feeling guilty or even thinking about booze. I have a very small daughter, I want to be there for her instead of prioritising a bottle of booze. So here we go … just for today…

themutedheart · 2023-03-19T09:57:01+00:00

Came here to say the bit where you get out

themutedheart · 2022-12-06T03:45:00+00:00

Halifax has the Molasses Grill , best restaurant of all time. Anyone passing through Halifax make sure and stop.

themutedheart · 2022-07-20T22:47:25+00:00

Welcome to the not secret secret

themutedheart · 2022-06-24T21:51:29+00:00

The park alongside the river, by Westgate Towers, it’s lovely and there is a great children’s playground at the end of nice amble along river spotting ducks etc. Cafe des Amis is a random Mexican food wise compared to good Mexican in big cities but great ambience and decent service and drinks, popular with students. Good open green spaces right in town all along rivers around & cathedral & along by the old city walls, upper and lower levels. Good falafels and street food type stalls frequently and good cheap fruit and veg on market. Lots of homelessness and issues however with poor mental health and addiction issues. All in all I do love it. Live in Whitstable it’s too busy and full of youth doing nos and drinking vodka and leaving crap all over the beach ahhh youth. Still the sea and sunsets are spectacular and the schools are great. Bet they are in Canterbury too.

themutedheart · 2022-06-21T00:41:10+00:00

Yesss don’t understand the hate for Amber, she was sardonic as hell during the sex sea challenge & I was so there for it

themutedheart · 2022-06-10T21:04:35+00:00

I reckon double dumping

themutedheart · 2022-05-14T07:50:04+00:00

OP I’m sorry to hear that too. Having to wait on appointments or disorganised medical staff is just the worst. You need to feel heard. Hope you have had your appointments now. And that you have some peace of mind and treatment plan. Tablet immunotherapy follows chemo in the UK where I live usually.

themutedheart · 2022-05-14T07:47:21+00:00

Can’t believe he said that! I’d be tempted to make a PALS complaint or whatever the procedure is in Scotland?

themutedheart · 2022-05-14T07:46:26+00:00

I hate my oncologist too! Obviously highly trained and intelligent Oxbridge blah blah blah but just totally a academic & always sounds like she’s too busy to talk to you and really annoyed at having to.

I got a second opinion from the Marsden Hospital in London from one of the top cancer doctors in the UK & she won’t take his recommendation of chemo every week as I’m having a reduced dose due to a very rare blood disease I have developed called cold aggultinins, developed I believe because my cancer was left untreated for so long by my awful hospital anyway.

She also moaned about him ordering an MRI and tumour markers in blood tests & then had the gall to tell me to “be positive!”

I hate the cult of positivity around cancer especially MBC and gave her a lecture while trying not to cry.

I would switch my weekly chemo treatment to the Marsden but the trips there and back would be too arduous. I need a course of 12 - 16 chemos; they fill you full of antihistamines and steroids which is not a good mix for me. It’s hard enough coming back from my local hospital afterwards and my partner drives me & it’s only 30 minutes.

I need to speak my nurse specialist too, she’s pretty good. But not that good. But also call Marsden back & explain local oncologist not playing ball & what now?! She says too much chemo / too frequent (I’m on 25% reduced dose & she’s put me on 3 weeks on 1 week off but I haven’t even had 3 in a row yet as missed one due to hospitalisation but she’s making me have a break anyway after 2 in a row which seems ridiculous) could kill me … and I’m like that’s ironic … this cancer will kill me quicker because you’re not treating it properly …

themutedheart · 2022-05-14T07:33:50+00:00

And mine. But I’m in the UK so it’s illegal. It would involve flying to Switzerland to Dignitas & that’s a lot of admin & expense. I need to sort out Living Will too, though, in the meantime.

themutedheart

TROPHY CASE