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

997 replies

SewingBees · 21/02/2025 09:14

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

OP posts:
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EachandEveryone · 22/04/2025 08:40

@Enigma53 sending positive thoughts x

sellotapechicken · 22/04/2025 08:58

Enigma53 · 21/04/2025 15:37

D day for me tomorrow. Full
scan results, yep dreading it! I know it’s spread because of the pain. Can’t believe I have no hair, I don’t recognise myself. Now got weakness in left hand. I hope they pass the assisted dying bill soon!!

Edited

Good luck today xx thinking of you and don’t be afraid to tell them you’re putting in a complaint about how you dealt with last week

Whatevershallidowithmylife · 22/04/2025 11:27

@Enigma53 take care and blessed thoughts to you..

@EachandEveryone yours looks more
like an abscess mine or more crater like! I’ve ended in hospital for not eating? sleeping all the time and being a bit delirious.‘I’m a nice quiet side room on my own

lucysmam · 22/04/2025 13:31

@Enigma53 I hope you're ok!

Enigma53 · 22/04/2025 13:33

Still waiting folks! Appointment was 12.10!!

Enigma53 · 22/04/2025 13:34

@Whatevershallidowithmylife you in hospital? What’s happening?

lucysmam · 22/04/2025 16:32

Nice to see they're as on time as ever 🙄. The shoddy timekeeping really doesn't help anything or anyone! Hopefully you're seen by now?

EachandEveryone · 22/04/2025 17:17

@Whatevershallidowithmylife ive lost 4kg in three weeks I just don’t fancy anything. Had my immuno today. My potassium is high does anyone else have this? The abbcess is just running like mad. It’s not infected yet. I’ve also been sleeping a lot but my hb is 9.

im keeping myself busy by watching another conman documentary😀

Enigma53 · 22/04/2025 18:20

lucysmam · 22/04/2025 16:32

Nice to see they're as on time as ever 🙄. The shoddy timekeeping really doesn't help anything or anyone! Hopefully you're seen by now?

A 2 hour wait!!!! WTAF!! 😱

Enigma53 · 22/04/2025 18:23

Well, tumour has grown a bit, but still contained largely to left pelvis. Some fluid in kidney, which needs monitoring obviously. Two more chemo and then scan. Mri is in the pipeline. Oxycodene or oramorph for pain. Chemo 3 tomorrow 🥺 Yep, it’s shit, but a manageable shit for now!

Enigma53 · 22/04/2025 18:25

@EachandEveryoneI wish your abscess thing would do one! When will it heal?
@Whatevershallidowithmylife how are you? Please keep us updated xx

EachandEveryone · 22/04/2025 18:36

Oh that’s not too bad news was he quite laid back about it? Mine also grown in the left groin but he never said by how much just shrugged it off really.

it won’t do one unless the immunotherapy like in as it is a lymph node pushing through it sounds vile and it is literally like a tap.

Enigma53 · 22/04/2025 19:14

I wouldn’t say laid back. It’s a fairly aggressive type of cancer and I’m acutely aware I’ve only 4 lines of treatment.

When will the immunotherapy kick in?

EachandEveryone · 22/04/2025 20:34

The immunotherapy is my last line. I don’t really know much about it I’m still very much head in the sand but I think that’s down to my consultant really as he is very relaxed. Drives my friends mad! He told me it can kick in anytime so I have no idea! I get it every three weeks. Tonight I feel like I’m full of cold so I imagine that’s down to it. What chemo are you on?

Enigma53 · 22/04/2025 20:48

He does sound very relaxed! Maybe a good thing? How many do you get? I hope it works, be good to turn that tap off eh? 🤞🤞🤞🤞 Do you have scans? Did they ever find the primary cancer?

My chemo is called doxorubicin. It’s bright red and evil looking! Not entirely sure if it’s doing much in honesty, the next scan end of May will tell! Talk about fucking rollercoaster ride, I want to get off!

RedRosesPinkLilies · 22/04/2025 21:11

@Enigma53 Glad the news wasn’t terrible, aware it’s not brilliant either. Xx

EachandEveryone · 22/04/2025 21:25

My last scans were three weeks ago which showed some growth but I hadn’t had any treatment since Xmas. In my mind I’ve blanked out that I have secondaries and I think that’s because the primary has never been found so this feels like the primary if that makes sense? I have developed what I can only describe as a slug on my vagina and I’m also quite swollen down there so it’s off to the gp I go tomorrow. I have immunotherapy as long as I tolerate it I’m guessing.

i hope the side effects aren’t too horrific can you taste anything?

Enigma53 · 22/04/2025 21:58

Yes I get that, particularly as no primary has been found. The “ slug” doesn’t sound nice, what is that do you think? My tumour is attached to my vagina and it constantly aches down there! A right royal pain!

I hope the immunotherapy works for you and gets rid of that abscess.

My taste buds go odd with chemo. But my main issue is mouth ulcers and mucositis.

Enigma53 · 22/04/2025 22:09

@Whatevershallidowithmylife are you okay?

GoldenDog1 · 23/04/2025 05:04

@Whatevershallidowithmylife I'm sorry to read you are in hospital.
How are you doing now?

@Enigma53 I'm glad your news wasn't as bad as you were fearing.
I realise it's still not the best news, but it's a small positive.
I can't believe they made you wait that long though.

Does anyone else's Oncology unit open on a bank holiday?
Mine usually does (with skeleton staffing and just open in the morning) mainly for those needing pre treatment bloods and for people collecting medication.
I was in on Monday (bank holiday) having my bloods and port flushed.
Yesterday while I was in having my chemo, it was suddenly announced they are not opening on the next Bank holiday Monday.
This means I now have to go in next Friday instead for my pre chemo bloods.
I'm so irritated as that is my week off chemo. I was hoping to go away as it is also my birthday next week.
Not a big deal in the grand scheme of things, but an irritation non the less.
Being on weekly chemo means I feel like I'm never away from the place, so having a whole week not having to go up there is something I look forward to.

I mean it's not an outpatient clinic where appointments are worked around bank holidays, it's more like a ward with people going in for life saving treatment.
As one of the nurses said yesterday, "can you imagine if the ward staff suddenly announced that patients wouldn't be getting their bloods and treatments because it's a bank holiday?"
I think a few nurses were a bit pissed off yesterday as it means come the Tuesday after the bank holiday, the unit is going to be rammed full ( some have had their appointments changed from the Monday to the Tuesday).

As I say, it's a minor irritation and I'll have to change my plans, but I'm sure I can come up with something.

I'm guessing this is yet another cost cutting exercise.

SewingBees · 23/04/2025 10:48

Yes my oncology unit closes on bank holidays. I've had an extra week off ribociclib, going in for my blood test today and get meds on Friday. I've had a very sore mouth this cycle so I was glad to have an extra week off.

OP posts:
Whatevershallidowithmylife · 23/04/2025 12:21

@Enigma53 it’s funny, we know there’s something going on and we fully expect the worst and then when it’s bad but could be worse it doesn’t give you any relief does it 😟

Im still in hospital taking up a much need bed in a side room and am hoping to get moved to the hospice for maybe a week or so. They want to trial different meds and hopefully just give me the boost that I feel only they can do because that’s their job and they need to tell the truth.

Going to have to look at a bed in the living room me thinks 🙁

Pic of my worst groin wound which they’ve said is the lymph fluids trying to escape because the lymph nodes aren’t working!

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Thread #5 for those living with incurable cancer, supporting each other and remembering the lovely friends we've lost along the way
Enigma53 · 23/04/2025 16:54

@Whatevershallidowithmylifeits all fucking shit! What I would give to go back to my ribociclib and letrozole, at work, with my hair, all stable. Nope, it can’t fucking happen. A NEW type of bastard disease has to grow and attach to my vagina!!!!! 😡😡😡😡

That wound looks sore! How are you feeling? Are you able to eat? When are you booking into the hospice? I hope they look after you well in there x

EachandEveryone · 23/04/2025 17:55

Ouch that looks bloody sore. Are you on morphine?

I’ve just been to the gp who said she was surprised I’m still here!!! Dear god. The slug attached to my vj is a vein due to all the Odema in the area.

Enigma53 · 23/04/2025 18:49

@EachandEveryone bloody cheek re: that GP remark! Does she not know we are resistance fighters?? 😡