Thread #5 for those living with incurable cancer, supporting each other and remembering the lovely friends we've lost along the way

[SewingBees]

New thread, an open invite to anyone living with Stage 4 cancer to share your worries and joys and just generally chit chat about whatever you're going through today x

I don't blame you at all

I was just going through the Facebook page and started thinking about that Scottish mum on here. Does anyone know how she is doing? She had a little boy going to high school and sadly she list her husband a few years ago. I hope everything is ok. Being on Facebook and on here is confusing me because my memory is shocking when it comes to remembering real names v usernames

@EachandEveryone her u/n is @balkonscot. I hope she is okay too.

There's another lady ( her u/n begins with C) SBC, a young son, but I haven't seen anything from her either.

I have been lurking here for ages but wasn’t in the right state of mind to write anything. Thank you for thinking of me.

I have had to change treatments yet again at the end of January as Olaparib had stopped working. I had been on in for 8 months and really hoped for more. I got massively spooked by my oncologist who at the meeting to discuss the not good scan (fucker has moved into lymph nodes), started asking me questions about whether I have sorted my affairs. You can imagine how I felt when I heard that!!! Apparently this is just a box ticking exercise according to one of the secondary breast cancer nurses but even so, fucking hell!!! Yet there are still lines of treatment available. I mean, talk about messing with you head! I feel as though my sails have been clipped. And I can’t bear to be outside during school lunch break as I can’t bear the sight of teenage schoolboys, thinking I will probably not see my son reach mid-teenage years. Although in my mind I have given myself the same “expiry” date as my current debit card - 08/27.

And yes, yes, to feeling so incredibly jealous of all the old people in the waiting room at the cancer centre. I am horrible and I keep thinking “What more do you want!??? I have a child who still depends on me, I need to see him through!” I even felt incredibly jealous of my older brother who had colon cancer 6 years ago and goes for yearly che k ups with all tests available under the sun (different country), he has just come out of one of these check ups with all clear still. I felts a pang of jealousy that I am so faulty that I cannot last more than 8 months on one line of treatment. But it’s what secondary cancer does to you, turns you into a person you don’t recognise anymore. Both physically and mentally.

Because I am in Scotland my next line of treatment is Enhertu. I had my first dose 2 weeks ago and the side effects hit me 5 days after the treatment - nausea, horrible fatigue, heartburn, and my mucous membranes in the nose and throat in particular seem to have been affected. Hair loss is imminent, of course. And I hate my wig - why do they make short hairstyles so “bouffant”????

Enhertu is my 5th line of treatment which is what is scary. Bloody cancer just won’t give me a break! And the paradox is that I feel absolutely fine (well, apart from the side effects of treatment) - no pain, no discomfort, nothing! Apparently even my bloods were absolutely normal at the time of the January scan, including all liver functions. Yet, progression. HOW CAN THIS BE?

Hi everyone.
First of all, I just want to say that I'm so sorry for all of you that are having a shit time right now.

Also, I have a feeling that someone I know personally is on here, reading my posts and sometimes reacting to them.
I think I know who it is, and I feel irritated creeped out and uncomfortable by them doing this.
I will still be posting from time to time, but maybe not as much.
Anything I'm not comfortable with this person seeing, I will just post in the private Facebook group.

Anyway positive vibes to you all xxx

@GoldenDog1 I have had the same concerns - I suspect that I would be quite easily identified by people who know me in real life by what I've posted here, though if they have spotted me they're keeping quiet.

Please use the Facebook group, we're still here (there) for you x

Hi everyone! Not too much been happening here really. Had painkillers increased but no difference so they’ll need to be increased again. Still sure they’re not treating it as nerve pain tho!
@Florsilvestredelcampo I have bilateral nephrostomies- let me know if I can help.
@GoldenDog1 noooo! hope they read this and back the fuck off!
@balkanscot I have two shortish blond wigs - not too bouffant- wore one once - if you’re interested I can take a pic of them (they are free scotland nhs ones)

@balkonscot I hear you regarding the jealousy towards seemingly healthy people/ older people and even family. I am going through a period of severe bitterness and resentment right now. Largely because I've a mouthful of ulcers, my hair is falling out, my pelvis hurts and chemo is looming! Fucking hate the horrid 86 year old battle axe next door. She's horrid AND healthy!!
I sat in my car in Morrisons and just glared at people ( until they glared at me back!) Also bitter towards my brothers. My youngest brother has a cyst on his arm. A CYST?? Fuck me, what id give for a cyst!! Yes, it's shit.

Oh and if anyone even thinks they know who I am on this forum and you are spying on me, then buggar off!

@batterychicken do you want a mouth ulcer buddy? I have a mouth full of pain. Thanks@RedRosesPinkLilies for linking the ulcer meds. Guess where I'm off to tomorrow?

Love to all xx

That's awful and such an invasion of privacy. I see mn and more our fb group as a lovely space with genuine friends and community. People should just fuck off with their prying! The cancer thread are militant in sending people to the storm thread if they're the partner of someone with cancer (as they should) this should be hidden from active really and you should have to actively have to search it out to engage with it. Maybe we should ask mn to take it out of trending like they do for other threads?

@Enigma52 happy to have a sore mouth buddy but I'm sorry you're joining me! The pastilles are really good.

If you want total numbing then try orajel max behind the counter but it is really very effective in that it numbs everything it touches including your tongue which is a really weird feeling and you do dribble a lot but it's got local anaesthetic in it so I've been using it when im going to sleep. As long as you don't eat with a numb tongue it's ok

@SewingBees Thank you, it's a public forum, I understand that, but this person is purposely coming into this thread to read my posts.
As I say, I'm pretty sure I know who it is.
I want that person to know, I have suspected them doing this for a while now.
A few little slip ups on the phone where I know I haven't told that person certain things, and they could only have got that information from my posts on here.
I want them to know that they are not entitled to know everything and that this is a safe space for people with stage 4 cancer to come and support each other.

They do not have cancer and have no reason to be coming into this thread to read my posts.
I'm easily identified from things I have posted, but I honestly don't know anyone else in my real life who would even come into this thread as there is no need for them to do so.
This person knows my situation, she knows what is going on, but we are not that close that I tell them every detail.
They are also very nosey so I'm not feeling all that surprised now that I know they are doing this.

@batterychicken that's it isn't it?
This is a lovely little safe space for us to come and vent, ask for advice, chat (I know I talk too much sometimes lol) with people who understand exactly what we are going through.
It's a public forum, so yes anybody can come in and read it, but for someone I know in real life to purposely come in to read my posts does feel like an invasion of privacy.
It has annoyed me and made me feel uncomfortable.

I've been thinking about it, and I won't stop posting as I refuse to allow them to take this lovely little corner away from me.
I'm only human though, and will probably feel a bit more wary knowing someone I know in real life is watching me on here.

Anyway moving on.....
@balkanscot it's lovely to hear from you, but I am so sorry you are having such a hard time.
When I got my NHS wig, I threw it straight in the bin as it was horrible. The look of it, but more the feel of it.
I found Amazon and Temu wigs quite good and not expensive at all.
They felt like better quality than the NHS one.

@Whatevershallidowithmylife I'm sorry you are still in pain. Hopefully they can get on top of that for you x

Today is the first morning in I don't know how long that I haven't had to turn the heating up.
It's supposed to be quite warm and sunny today so I am hoping to get out in the garden again and cut the shrubs and bushes back a bit more.
I would also like to get a deeper spring clean done over today and tomorrow as it's back to chemo next week so back to no energy.
I'm also secretly hoping someone will phone me with a better offer.

Does anyone else have plans this weekend?

@GoldenDog1 shame on that person. That’s really unpleasant, voyeuristic behaviour of someone who is not a real friend.

We have 6 friends visiting this weekend- people we’ve known for years. It’s very kind of them all to make the effort as we live at the opposite end of UK from most of them. Plans for drinks and dinner, and probably just some dog walks. Note to self… be sensible!!!!

@GoldenDog1 ’s friend - see the difference in approach and lovely support?

Hope we all have good bits to our day xxx

Morning all from sunny Cheshire ☀️☀️

@GoldenDog1 Personally, I think your " friend" is a privacy invader ( PI) That's some effort on her part, to rummage through your safe space, for bits of information! Some people!

@balkanscot it's good to hear from you. We will always be here if you feel like a chat/vent. I've got a hair dilemma too, in that I just can't accept it's all going to come out, which fuels my anger more!

@batterychicken my mouth is horrifically sore! I'm going to deplete Boots supplies later today!

This weekend my daughter is home from uni. So it's a coffee and a trip to Boots. Car needs a good clean and so do the windows. Then I may make a cake and some garlic bread ( not eaten together!) Then ( yep very sad I know) we will watch the BGT auditions on Tv. Wow, what an exciting life one leads! 😆

Xxxx

Morning folks 🌞 lovely sunny day here 😊

@Enigma52 @batterychicken the sore mouths sound dreadful - I hope you can both get some decent relief from them!

@GoldenDog1 some people are dicks, unfortunately your friend seems to be one of them. To actually seek out your posts here is ridiculous behaviour & I'd be raging if it were me.

@balkanscot nice to see you 😊.

We're off to a(nother) gig this evening, in Leeds. Dd1's just washing up & I'm waiting for the washer to finish, then it's showers & get sorted for both of us.

Well so far it isn't quite as warm and sunny as BBC weather was saying it was going to be.
Hopefully the cloud cover will bugger off by this afternoon.

I also want to say, I do understand about the hair loss.
In 2023, I first started getting bad hair loss from suffering with mal nutrition.
I had long thick hair that started coming out in clumps and I had bald patches appearing where my parting was.
When the chemo started, my hair was just everywhere.
I remember I was constantly apologising to the nurses and cleaners for the amount of hair all over my hospital rooms.
In the end, it was so bad I got my son to bring his hair clippers to shave it off.
It was devastating.
After a while I started to try and have fun with different colours and styles of head coverings. Then I bought some hairbands and really liked wearing them.
After chemo it started growing back a little, but then I was told I would lose it again on the palliative chemo I was going to be receiving.
Only it never happened this time. I was constantly pulling at my hair to see if it was falling out ( I still do this now).
It's a lot thinner in places and grows much slower than before (this is probably due to the menopause too).
What has been different this time is, I lost all my eyebrows and eyelashes.
That never happened with my first line chemotherapy.
They fall out, grow back a little then fall out again.
I constantly had sore eyes from the eyelashes falling in them.
A few weeks ago, I bought some eyebrow and eyelash growth serum and it seems to have helped, although both grew back mostly White.
I sat and tinted them the other day and although not perfect I feel better.
Anyway my apologies if any of my recent posts about messing my hair up offended anyone.
It wasn't my intention, I'm just incredibly grateful that I didn't experience the expected hair loss this time.

Big hugs to everyone and I hope you have got more sunshine than me 🌞

I’m definitely not offended @GoldenDog1 . For one thing you’ve had more than your fair share of shit to deal with, and for another cancer affects us all so differently

My hair has fallen out again, think my eyebrows are going too - fortunately my eyebrows are dark and thick even at 56. Strange blessing. So it takes a lot for me to lose them altogether

I don’t mind the hair falling out, so much as it growing back in and looking like a loo brush for months on end. Trying to decide when/ how to cut it.

Joy of cancer. We could probably write a book between us xx

@GoldenDog1 I'm not offended either.

We stand united in this group; hair loss / eyebrow and lash loss, or not. It's our place to rant, celebrate, cry or chat.

Fucking cancer though! How very dare it try to part me from my hair!! 😆

Thanks ladies, I appreciate that.

The sun has made an appearance and I've been out in the garden cutting back trees and shrubs.
20 minutes and I'm absolutely knackered.
I've barely made a dent in what needs doing.
I'm now seriously trying to weigh up if I can afford to get someone to do it for me.
I have no idea how much these things cost.
Now I'm going to need a nap.

@GoldenDog1 what serum did you buy?

Bizzarrely, my right eyebrow and lashes take leave of my body every few weeks, since chemo! Just the right ones, not the left & the hair loss from the other meds seems to have slowed down (it warrants that little emoji 🤣). Right now, my lashes are lovely, next week...they'll be falling into my eye again.

@GoldenDog1 I reckon if you can afford for someone to come and help with your garden, then it is money well spent and gives you time to do other things? DP and I, have what I would describe as a "rambling" garden and neither of us have the will to do much with it these days. It was ace when the kids were small, but now it kind of sits there, untouched.

p.s No idea why I am now Enigma54??
But I have discovered the Edit function. Wonder why it isn't on the app??

I'm using UKlash & UKbrow.
I also bought the hair growth serum in the hope it would help with the patchiness, but that didn't do anything for me.
Bizarrely, like you, I have one side better than the other.
For me my right eyebrow and eyelashes grow better than the left.
I do think it is quite expensive though, not compared to other brands, but still a bit costly.
I recently picked up an eyelash serum in Homebargains for a couple of pounds.
I've not tried it yet, but it has good reviews for both the eyelash and brow product.
I'm going to try this when my other serum runs out.
It is called Biovene.

@Enigma52 this makes me laugh. You've also been Enigma53 at some point lol.

My garden is very small and very wild.
I love the wildness, because despite its size, it attracts lots of wildlife.
However the wildness is now choking everything else so it needs doing.
I'll maybe get a quote and go from there.

@GoldenDog1 I know right!
No how or why my UN magically changes! 🤷‍♀️

Yep, got a wild one here too. Like yours, it attracts wildlife, so we like that side of it. But seriously, it could be growing all sorts ( you get my drift?) and we wouldn't have a bloody clue! 🤣

@Florsilvestredelcampo how are you getting on today?