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

@Enigma53 My oncologist was not optimistic and my chemo is working much better than expected
Keep going. Who knows??? xxx

I know, no choice but to keep going.
I waited 1.5 hours for my 5 min depressing appointment!

@SewingBees a scenic drive along the coast and stopping in Alnwick.
I'm really looking forward to it.
Are you anywhere near Alnwick?

@Enigma53 unbelievable xx

@Enigma53 that's ridiculous that you had to wait that long.
My Oncologist was also not optimistic, but here I am, I am still going.
Remember, you are not a statistic, you are you. Xxx

The people who get on my wick our those who seem to think we exist to benefit them and can answer research questions or questions about how they can support others.
I did have chemo last week before coming home and I've got another top up on Friday I was discharged without any advice about nephrostomy care and in the words of the nurse specialist a bit of a 'woolly' discharge so I'm still waiting for contact from the district nurses regarding that.
My oncologist said to me that he still felt that there were treatment options however if I felt that I had come to the point that I didn't want to carry on he would respect that . But as a long as I can carry on I will.

@EachandEveryone ice cold and chittering are symptoms of infection and fever. From memory they took away my blankets when I was like this and opened the window to bring the fever down - I was not impressed!

When are you due immunotherapy?

@Florsilvestredelcampo I hadn't realised you had your nephrostomy done. Do yours come out your back or side?

They only did the right side the Dr said he liked to do one at a time with the option to do the other if needed.it seems to be draining okay and I'm more comfortable ,it comes out the back

No! Other end of Northumberland, close to the Cumbrian border. It's a big county!

Alnwick is fab though, and I love the coast. I am planning to take my daughter on a boat trip to see the puffins this year, we got the ting wrong last time and they'd all left.

We also have a habit of turning up to places just to be told the puffins have just left!

April fools day I start 😀

@SewingBees ah that's a shame.
That's the problem with some of these counties, they are just too big 😂.
I love Puffins, beautiful birds.
Next month is the start of the little boat trips to visit the seal colonies around the coast here, so hopefully I'll be able to book on one of them.

Ah mine are in my sides and as i have a stoma i can only lie on my back. Hope you get on ok with them

Any wig recommendations? I’ve spent a months PIP on 2 wigs, same colour, length etc as my old hair. Nope they aren’t right. They’ve been thinned and trimmed. Still wrong ☹️

I got two wigs and was quite happy with the style but couldn’t stand the feeling of them so just went full on rocking the bald look albeit with a full face of make up which made it look like I was intentionally bald. I did have a couple of neck tubes from i think the trespass shop which i would put on to nip to the wee shop at the end of my street. Sorry - no help really!

I never bothered either even though I had a really lovely one. Far too hot and made me self conscious. I’m no beauty but there are many lovely hats out there and I did at time like my make up and jewellery. It grew back very quickly as well.

That must be difficult it takes a while to get used to doesn't it? I kept forgetting to do the valve up after emptying it steep learning curve!

Yes wigs are very uncomfortable I’ve decided.

Having a hideous time with this doxorubicin chemo. Told my partner that I just can’t hack it this time. Ribociclib was a walk in the park in comparison ( except it wasn’t at the time!)

Yes my second line chemo was horrendous I could still do so much the first time round now I’m hard pushed to get out of bed before 11.

last day for the carer today and I’m kind of glad they haven’t been much use. Not one of them stayed for the full 45 minutes and rolled their eyes if I asked for them to change my bedding with me.. I was told by their supervisor that is one of their jobs so it was annoying really and makes me think of people they are looking after that can’t speak up.

@EachandEveryone yes, bring back ribociclib, all is forgiven! This is a whole new fucking fresh hell! I have until next Saturday to get my shit together as I want go shopping with my daughter. At the moment, I can hardly get my arse up the stairs!

What’s with the carers not helping with changing bed clothing? If it’s down as a task, do it! When does immunotherapy start? Did your sister come down?

Starts 1st April. Gosh it’s unreal the amount of clothes we collect. She was a great help and she came to my appointment with me and met my friends so it was very nice

Omg!

PALS at our local hospital are so bloody hard to actually speak to! I wonder if they deal with complaints about themselves 🤔🙄

Oh they are a nightmare.

im going out tonight I hope the pain is under control before I do and that this blooming wound doesn’t leak all over! I actually won tickets I’m really looking forward to it www.royalalberthall.com/tickets/events/2025/an-evening-of-comedy

Ooh, one of my favourite bands is playing there tomorrow night as the opener! Bit far to travel for an opener (done it before, mind!) but I did have to sit on my hands when I realised our last train home was at 11:30 pm & it was totally do-able but stupid.

I hope you have a fab evening @EachandEveryone !