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Stage 4 cancer... ? incurable? Thread #2 is here. In memory of our inspiring, lovely mowly77

1000 replies

Tilllly · 29/02/2024 08:45

New thread
All welcome, reluctantly

OP posts:
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26
HerbalRefreshmentt · 23/03/2024 20:39

@Tilllly I lost 6.5 kilos jn 2.5 months or so on my last regimen due to anorexia. Sometimes it doesn't matter how small the portion is or how frequently you eat, your brain just cannot comprehend hand to mouth motion and food is repulsive.

What was a major impact to me beyond the weight loss was the impact on my salt/potassium levels and other vitamins and minerals (and corresponding bloods impacts) which would have otherwise been ingested fine thru food. Its taken some time and extra supplements to get that sorted, so shouldn't be ignored.

I'd suggest at the very least drinking things like coconut water for the electrolytes, or fruit smoothies with veg blended in or with a good comprehensive protein supplement. All I wanted to do was drink so those two things would have helped a lot (and they've been helping now as I'm starting to have food refusal again). And no one wants to go on thr shakes, but the exist for a reason, don't be shy about getting some in. I had husband get me some plant based coconut chocolate ones and oh they hit the spot. Cold and creamy and slurp. Slurp was fine, chew was not!

TwigTheWonderKid · 23/03/2024 20:39

@Tilllly you can ask to be referred to a dietician. They are actually quite helpful and supportive.

When I find eating difficult I try not to worry too much about balanced nutrition, or even calories, and just eat what I fancy. I find that sometimes starting with something "unsuitable" can stimulate your appetite.

WrenNatsworthy · 23/03/2024 22:03

@Tilllly I have been like that on and off for ages. The one thing I can always eat is melon.
I never stopped wanting to drink though..I was also eating jelly, soft desserts in pots, and bought smoothies.
I still can't eat stuff if people bring me too big a portion, I am better off with a small amount and then asking for more.

Comfort food like mashed potato. Home made soup that isn't too rich- a nice clear soup.

LuciaPillson · 23/03/2024 22:13

@Tilllly a couple of suggestions though of course what works for me may not work for you.

Seconding dietitian and if you can find a dietitian who works with cancer patients it can be really helpful.

Hydrating with electrolytes, but in proper proportion is helpful, coconut water while nice hasn't got the right proportions but a commercial solution will, I just don't know the UK products. Dioralyte sort of thing? We have ones called Hydralyte and Pedialyte here and I always have them in the house to sip on as I'm prone to dehydration.

Also seconding eat what you really fancy. My onc said I don't care WHAT you eat I just care THAT you eat.

I rely a lot on soup, it does go down easily and sometimes it's all I fancy and easier to eat than a plate of something solid. I used to have ice cream but now on oxaliplatin I have cold sensitivity so I have yoghurt as I can warm it slightly in the microwave. There's drinkable yoghurt too. Or as has been said the shakes. Slurping is good, I agree!

For protein you can mix protein powders into things or nibble on your favourite protein, chicken, cheese, nuts or whatever. You can make smoothies with almond butter. Buy the things you really like even if pricey, I like Boursin for instance and can eat it on its own or on a cracker. Or hummus or some kind of potted meat, or peanut butter and jam.

And light things, fruit if you like it, fresh or tinned for example.

But the most important thing is to enjoy what you're having. Serve yourself little portions so you're not trying to force a lot down at once and then you can either have seconds or if you're then sick of the meal switch to a pudding, biscuits and tea or whatever feels right.

GoldenDog1 · 24/03/2024 02:40

@Tilllly before I had my feeding tube put in (now back out thankfully) I was prescribed Fortisips.
The protein ones were not much bigger than a shot really, lovely flavours and when refrigerated tasted really nice.
They are high in calories and packed full of nutrition.
It might be worth asking about them.

ShalommJackie · 24/03/2024 06:14

Tilllly · 18/03/2024 03:35

They gave me a copy but it's on both GP and hosp notes

And actually, not sure where it is 😂
I've not lost it, it'll be in my notebook or on computer desk, just not sure where.

It's important to let people know. So my friends, vicar etc know if my heart stops, they're to tell the paramedics I have this DNR in place. Otherwise they'll start CPR and take me into ED on that basis. It's harder to stop resus than to not initiate it in the first place

Sorry to quote this. My team told me to put medical info in a Tupperware in the fridge. Paramedics are trained to look there for dnrs etc

Tilllly · 24/03/2024 06:39

Apparently the operators on a 999 can see you have one?

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Florsilvestredelcampo · 24/03/2024 08:37

I worked in a nursing home and one of the residents families had laminated the DNR as they thought that would be the best way to preserve the paperwork. However that voided the papers as it has to be seen in its original state.
Luckily it was spotted and redone before it was needed

Florsilvestredelcampo · 24/03/2024 08:51

I'm about to take my son and 4 excited friends to a trampoline park wish me luck!
I've included a picture of his birthday cake it's not going to win bake off but I'm proud of it.

Stage 4 cancer... ? incurable? Thread #2 is here.  In memory of our inspiring, lovely mowly77
WrenNatsworthy · 24/03/2024 09:39

They don't call it the DNR here they call it the Respect form. Mine is with all my meds and everyone knows where it is. It only got properly completed last week when I was in hospital.

Great RocknRoll cake @Florsilvestredelcampo obviously made with love and that's the most important thing.

Tilllly · 24/03/2024 10:13

It's called a respect form here, too

Amazing cake

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GoldenDog1 · 24/03/2024 11:55

Florsilvestredelcampo · 24/03/2024 08:51

I'm about to take my son and 4 excited friends to a trampoline park wish me luck!
I've included a picture of his birthday cake it's not going to win bake off but I'm proud of it.

I love this cake it looks fab.
Have fun at the trampoline park.

GoldenDog1 · 24/03/2024 12:06

Do any of you have to deal with people sending you links to quack alternative cancer treatments.
I'm saddened that I've just had to block an old friend because of this.
She's sent me numerous links that are quite frankly ridiculous.
The final straw came when she publicly posted on my Facebook this morning chastising me for having chemo as this is "killing me" and I should be doing the methods in her links.

I'm saddened as we have been friends for years but I can't take anymore.
She's not the only one either to have been sending me this stuff.

I get people have my best interests at heart but this is too much for me.
Do they think I haven't done my own research or that I'm deliberately trying to speed up my own death?
I'm all for trying alternative treatments alongside what my Oncologist says but I'm sorry but a cup of Green tea isn't going to cure my cancer. (That's just one thing that has been suggested).

TwigTheWonderKid · 24/03/2024 12:21

@GoldenDog1 not my friends, thank god, but just after I was diagnosed with my first cancer, the young lady testing my eyes at the glaucoma clinic surreptitiously handed me a piece of paper with a YouTube link on it to a "prince" who lived on one of the Carribbean islands and apparently could cure me... Then there was the man I was talking to in the scanning waiting room whose very young wife had BC and he was telling me all about about a special fruit they were going to import from Africa which he was convinced would cure her.

Tilllly · 24/03/2024 12:48

Oh @GoldenDog1 , I'm so sorry to read this
Excuse my language but they're a fucking pain in the arse

I've had it a lot with turmeric

I usually snap that my oncologist is one of the leading lung cancer experts in Europe and he can't cure me but an 80p jar of spice from Asda can?

I think it's pseudo science as most things recommended are anti inflammatory- green tea, turmeric, berries. These will probably all be good for you, maybe even have a teeny tiny effect on the odd tumour, but cure you? Nah

Often, people don't know what to say so... but your "friend" sounds batshit crazy.

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Tilllly · 24/03/2024 12:53

I remember a good few years ago now, a mum at DSs school
One of the TEACHERS told her chemo was killing her and was a conspiracy btwn the doctors and pharmaceutical companies...
the mum complained- esp as was said in front of her son who'll have been 10 or so at the time.
Can't remember what happened about it tho.

OP posts:
Tilllly · 24/03/2024 12:56

I've had similar @TwigTheWonderKid

Someone in a very normal, middle of the road Christian grp I'm in, messaging me outside the grp

Trying to get me to a prayer meeting of the Supernatural Life Church, as God is using my illness for greater things and they can cure me... when I looked on their website, the first thing I saw was a donate button

I politely declined but they didn't accept that and I ended up being very firm, probably rude, to make them stop

OP posts:
SewingBees · 24/03/2024 14:19

@GoldenDog1 and everyone else who's had to deal with the quackery - I haven't personally had to deal with any of that sort of nonsense and I'm sorry you have. I'm sure these people think they're being helpful but actually it's hurtful and harmful. The suggestion that medical professionals are getting it wrong, and that we as patients are making poor choices. It's fucking insulting.

GoldenDog1 · 24/03/2024 14:38

Thank you for all your replies.
It seems I'm not the only one.
I get people are trying to help but they are doing the opposite and it's insensitive.
This morning I felt embarrassed and upset at her public post.
I sent her a strongly worded but polite message before blocking her.
I'm now to the point where I'm thinking fuck it, if anyone else continues like this they will be getting blocked too.
As you said @SewingBees it is fucking insulting.

Florsilvestredelcampo · 24/03/2024 16:03

I've not had the "Have you tried.." with cancer but I did with Crohns .If I drank all the aloe Vera juice that's been pushed as a miracle cure I would be able to fill a small lake. Don't even get me started on have our tried giving up gluten,dairy etc.
If I'm feeling kind I would say however misguided it comes from a good place. But most of the time I think some people are just self important twats

WrenNatsworthy · 24/03/2024 17:11

GoldenDog1 · 24/03/2024 12:06

Do any of you have to deal with people sending you links to quack alternative cancer treatments.
I'm saddened that I've just had to block an old friend because of this.
She's sent me numerous links that are quite frankly ridiculous.
The final straw came when she publicly posted on my Facebook this morning chastising me for having chemo as this is "killing me" and I should be doing the methods in her links.

I'm saddened as we have been friends for years but I can't take anymore.
She's not the only one either to have been sending me this stuff.

I get people have my best interests at heart but this is too much for me.
Do they think I haven't done my own research or that I'm deliberately trying to speed up my own death?
I'm all for trying alternative treatments alongside what my Oncologist says but I'm sorry but a cup of Green tea isn't going to cure my cancer. (That's just one thing that has been suggested).

Fucksake.
That makes me livid.

WrenNatsworthy · 24/03/2024 17:17

How dare she tell you how to manage your illness?

She can have all the coffee enemas she likes when she gets a terminal illness but this is your life, and your death actually, so she can butt out.

I'll happily take supplements that can enhance treatment and prop up my immune system, I'll mediate to keep myself calm and positive, but people who think that there's some mad conspiracy when half the world is likely to get cancer drive me up the fucking pipe.

RedRosesPinkLilies · 24/03/2024 23:32

Someone sent me a recipe for making some sort of drink from steamed asparagus 🤮

She even checked up - had I tried it yet?

Yes of course - that’s why people have been dying of ovarian cancer for ages- didn’t drink enough asparagus!

I don’t mind eating it. Don’t think it’s going to cure my cancer, though.

WrenNatsworthy · 24/03/2024 23:45

It's like my mate who is vegan got cancer. I have experimented with all kinds of diets and supplements, read books, done meditations but one thing I refuse to do any more is think this is my fault in some way.

There are people that have 'beat cancer' online whose patronising ways make me want to throw things at them!

Tilllly · 25/03/2024 01:41

@RedRosesPinkLilies
A drink of steamed asparagus.... 🤮

There's a special place in hell for the inventor of that recipe

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