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

It’s horrid. I’ve come to the sudden realisation that I’m just a number at that hospital, it’s like a cattle market. Prioritising the elderly who have come to their appointment, acutely unwell
( instead of ringing the hotline number we are given) and then having to see the 6/7th consultant, who again appears disinterested and aloof. Where do we go with this shit, just where? Now having to navigate pain relief, our kids / families. I think of dear Twig alot, her boys, so young, your 12 year old son, my partner and parents. The realisation that we are not immortal and this cancer shit is truly horrendous and it just isn’t going anywhere.

I know I’ve yet to see the same dr in clinic yet. It’s just a massive cluster fuck of shit

It just so sad and so unfair

Yeah a massive cluster fuck of shit

Compared to a lot of the experiences on here which I read with horror my treatment has been good. But since officially entering palliative care I think there has been a subtle shift. people promise so much but reality is very different.

That not to say that I don't also think it's a massive cluster fuck of shit

@Enigma53 I'm so sorry to read your update. I've nothing useful to say that would make you feel any better, but big big hugs.

I’ve been up all night worrying about everyone finally got out of bed for my appointment and he’s changed it to a phone appointment! I’m sat here all dressed up for me, anyway. I’m glad tbh.

i cannot fault my consultant but you are all right we do get treated differently. I noticed with the immunotherapy much less banter, the massage therapy never came my way and I got on really well with her, she never even asked how I’ve been. No one explained what immunotherapy was to me or how long it takes and even both the receptionists were short with me and I got told off for changing my dressing appointment

@EachandEveryone how many sessions of immunotherapy have you had?

Second one due Tuesday. So, some progression which is to be expected as I finished chemo December. The chills and sweats all side effects. Good job it was a telephone appointment as the tissue viability nurse turned up and was fuming at how the district nurses have been doing my dressings. She filled the hole up with a gel and has put a charcoal dressing on top and she has gone to talk to the DN about how they have to follow her instructions. It won’t go until the immunotherapy starts working it’s a lymph node popping through. She also found a massive disgusting looking vein on my vagina it looks like a worm and she wants me to send it to my consultant which I’m embarrassed to do but I guess I should warn him and not send it on the WhatsApp?

@EachandEveryone its not a time to be embarrassed. The nurse sounds good - which is almost a miracle theses days. Send the pic. Take all the help you can get xx

Had my 14th chemo treatment today. It was fine and ca125 is stable at 130
I used to almost like going to chemo as the nurses were lovely and friendly.
Last two weeks the nurses have been much more practical and serious - I feel more of a number.
I do realise that I’m a number. But the lighthearted atmosphere in the ward helped.

Love to all, especially those having a shit time xxx

@EachandEveryone definitely do not be embarrassed. They’ve seen it “ all” before remember 😉 How was your phone appointment with consultant? Really hoping the immunotherapy works for you! 🤞 Did you get your mauled done in the end?

@RedRosesPinkLilies glad chemo is going well, stability is good in our game!

@Florsilvestredelcampo hope you are bearing up today? Xx

@sellotapechicken right, that sarcoma team are REALLY pissing me off now! I saw the 7th body yesterday ( despite him telling me they were team of 3??) But here’s the moment he fucked me right off.. he walks in, looks at me and asks “ English or Urdu?” I say
“ pardon” he asks again “
“do I want to speak Urdu or English?? My name is foreign. Does that make me Urdu speaking?? Then he completely dismisses all that the last consultant said last week and proceeds to tell me “ Mmm.. it’s got bigger… come back next week. The manner of a fruitfly !
I HATE waiting area 3!!!!

Just waiting for the GP to call me my nephrostomy site is really sore . I can't see what's going on but I think it might be dry skin building up. I've had zero after care despite asking numerous people.

@EachandEveryonemeant NAILS done 🙈

That’s rubbish, no aftercare. Definitely ruffle a few more feathers! Hope GP can help.

Im off for a heart scan now. This is the moment they tell me my heart is also fucked! Then to pick up some kind of morphine based drug from the pharmacy. Great!

No im getting nails done tomorrow after my bloods. Consultant said I’ve had progression he’s not worried just waiting for the immunotherapy to kick in.
The GP has just rang honestly they are getting on my nerves now insisting that I have more blood tests before they can prescribe my thyroxine even though I’ve told them I’m having very thorough blood tests every three weeks at oncology. It’s just another thing I now have to do. I’ve had three swabs taken of my smelly ulcer and they won’t take any responsibility to chase the results up they are blaming the district nurses even though they told me results are nothing to do with them they just take the swabs. Have can three swabs go missing? There is absolutely no communication between these people!

Oh my god! That is horrendous! Complain complain complain!! I’m so sorry, that is completely out of order!!

Good afternoon.
Just had a phone call that said that they can’t cure it, just try to extend life so can I join you please?

@Okitsme of course you can! Sorry you're joining us. How are you feeling?

Hello @Okitsme sorry you’re here but so glad you found us.

Sorry to hear that @Okitsme
Do you want to say more? Just say as much as you want to. We are all in the same crappy boat - some of us doing well, I admit, but we know darn well it won’t last.

Thanks for the welcome. I’m a bit in shock, the specialist nurse rang when I was at Waitrose! I’m in organising mode but can’t plan anything until I see the oncologist. Luckily we have a wonderful MacMillan Centre attached to our hospital so I’ll go there next week.
All this was found when I had an inflamed pancreas- thanks Mounjaro- three weeks ago so I’ve not really been ill, I haven’t eaten well since then though so I’ve just treated myself to a scotch egg and piccalilli from our local food hall. It was delicious. I am going to have lots of treats and it’s going to be normal until it isn’t.

When do you see the oncologist?
You have the right attitude- everything is normal till it isn’t.
When it gets to you and you need to off load - please come here if there’s no one else.
We do also have a facebook group - it’s private. But we use that too - just depends a bit how we feel, or if we feel what we are saying is too ‘outing’.
There’s no pressure or rush - but just DM one of us and we can add you to that group. Will need to become Facebook friends too.

Before cancer I didn’t have that many Facebook friends 🤣

I have stage 4 ovarian cancer. It was diagnosed April 23. Had chemo and surgery. But it never went away. Maintenance treatments didn’t work. Had an awful time end of 2024/ beginning 2025. Now on ‘Hail Mary’ weekly chemo which is working. But I think starting to cause lung problems.

The whole experience is a rollercoaster and a minefield, and you find yourself managing other people’s emotions as well as your own.

This group is a godsend, and there’s a calmness about it too- which is lovely. Although we do rant about hospitals/ Drs/ nurses. We are all in the same boat and we all know the reality and the pain.

I hope you find us helpful xx

Thank you again. I don’t know when I see the oncologist so it’s a bit more limbo. I said to my husband I’d like to see Easter and he pointed out it was this weekend, so that’s one goal met.