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Thread #6, living with incurable cancer, taking ALL the drugs, and remembering our fallen comrades

1000 replies

SewingBees · 24/06/2025 15:08

New thread!

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Enigma53 · 07/08/2025 13:44

How is everyone? Had chemo yesterday. Feel grim today. So tired and tired of it all. Tired of every new ache and pain. Tired of hospitals, bloods, looking for veins, travelling, scans and continuous shit news. What is the actual point?

EachandEveryone · 07/08/2025 15:45

It shows inflammation they say colitis but the medical want to stop until they’ve tested all the stools. Temp 39. I’m like a baby and I’m sick of people saying eat little and often. I just shit myself after having a yogurt! Sips of water do the same.

my niece is here before she goes back to St Andrews it was really bad timing. Anyway the CNS came to see me and she’s fab. She said the camera will go up me tomorrow and she’s in touch with my oncologist. The scan showed something pressing on my iliac veins. She’s sent it to the vascular team who are thinking it’s just a lymph node reacting to the immunotherapy. If I have to stay on steroids for long my treatment might be stopped permanently and I said but there’s nothing else after that. She said no. Anyway I started crying and so did my niece. I think it’s the first time anyone in my family has heard from the medical side and I know she will go back and tell my sister and mother so I’m quite relieved really.

GoldenDog1 · 07/08/2025 16:17

@SewingBees yep they said 8 cycles was the gold standard for someone in my position. I said well I'm not a gold standard, a guideline or a statistics.
I'm an individual patient and want to be treated as such.
And here we are.

I'm going to try and get my B12, iron and Vitamin D tested.
The fatigue is awful.

I've got a couple of things in the pipeline to look forward to, although they are not definite yet as they will depend on how I'm feeling and my scan results.

Enigma53 · 07/08/2025 16:41

@EachandEveryone bloody hell, It’s a head fuck of a journey isn’t it? Why are you on the steroids? Hopefully you will be able to continue with the immunotherapy. Is the temp due to the inflammation?

EachandEveryone · 07/08/2025 17:33

They have put it down to inflammation and I’ve got colitis as a side effect of immunotherapy has anyone else had this?

Enigma53 · 07/08/2025 18:32

No, immunotherapy isn’t part of my treatment. They could have warned you colitis is a known s/e though.

sellotapechicken · 07/08/2025 18:47

EachandEveryone · 07/08/2025 17:33

They have put it down to inflammation and I’ve got colitis as a side effect of immunotherapy has anyone else had this?

Yes I had colitis with my immunotherapy. They gave me a Crohn’s disease medication called infliximab to stop it

EachandEveryone · 07/08/2025 21:20

Did you carryon with the immunotherapy?

sellotapechicken · 07/08/2025 21:54

Yes I have the immunotherapy for melanoma every 3 weeks xx took a while to get them to agree to putting me back on it but they agreed in the end!

PrincessFluffyPants · 08/08/2025 08:01

@EachandEveryone I really hope they can give you something to keep you on your immunotherapy, it sounds like it's possible so I'm clinging onto the positives with you.

@Enigma53 Hoping today is a better one and you managed to get a better sleep last night.

I'm doing okay, just the usual stuff going on for me, tired and waking up in pain every morning, dealing with the pain through the day, putting on a brave face /slapping on the make-up for anyone who might see me and trying to stay awake and be "normal". Hate taking oromorph as it makes me queasy, so I've been trying this week to manage on just naproxen/codeine and paracetemol but it only lasts a couple of hours, if that and I look like shit, I can see the strain on my face.

Anyone tried a grounding sheet? A few weeks ago I was awake in the middle of the night, and you know when you are in pain and your eyes are crying but you aren't actually crying if that makes sense? I was in that state. It wasn't time to take any more painkillers so I was trying to power through and was doom scrolling Instagram and for days and days had been seeing adverts for one of those grounding sheets that plug into the electrical socket to pick up and "earth" you, supposedly to reduce inflammation and pain. I'd explored the "science" a few weeks before but decided it was bollocks but in my desperate state that night I thought sod it, nothing to lose except my money, and ordered one. Next morning I had complete buyer's remorse but of course it had already been dispatched (from China!) so there was nothing I could do. It took so long to arrive I had almost forgotten about it and when it did it was wrapped in the tiniest plastic bag, all scrunched up and I just thought I'd been well and truly ripped off. Still, I laid it across my bottom sheet as instructed, trying to get it into position where my upper torso would be and waited for results. First night, nothing, just woke up with it messy beneath me . Second night, nothing, just a messy bed. Third night, nothing, same again, all rucked up underneath me. Then, at the end of the week I woke with no pain, and it only came on after a few hours of being up and about. The same the day after that, and then the day after that. I actually woke up and felt like my old self, it was brilliant. Since then, because it was rucking up underneath me I've moved it further down the bed where my calves are and I just don't think it's working its magic now. Debating with myself whether it did work a little bit or if I believed it was going to work so it did (but I didn't think it was going to work so I didn't), or if it was just a coincidence or whether I need to move it back up the bed and have it inevitably scrunched up beneath me and try again with it. Or just admit to myself I got ripped off.

Having written all of the above, and re-reading it I've decided the answer is probably just get in touch with the GP and ask for better pain management and stay away from Insta adverts 😆

Enigma53 · 08/08/2025 09:47

@PrincessFluffyPants what’s the general consensus on the ground sheet then? Worth a shot? I’m always a bit dubious about these things, BUT sometimes you have try to know.

Where’s your pain? Oramorph is the work of the devil for me too; hate the stuff. I’m on oxycodone liquid and patches. I need a higher strength patch ( they come in 5’s, 10’s and 20’s) So will tinker with doses this weekend.

Are you on ribociclib? I tolerated that well ( pleural effusion in lung) and it cleared my breast mets up nicely. I was doing so well, until this bastard sarcoma popped up. My life and body has gone to fuck!

Do ask about a different pain relief if oramorph is making you feel queasy.

Hope everyone is okay as can be. Scan for me on Monday and chemo
Wednesday. Great!

@EachandEveryone
hows it going?

lucysmam · 08/08/2025 10:32

Morning all 🌞

I'm just listening to the new Ethel Cain album - very cleverly done, but doesn't hit me like some of her other stuff. That said, there have been some tears (did not realise her love was the army boy who didn't make it home 😥) & some happy reminiscing over seeing Dust Bowl live last summer with dd1 who introduced me to her music. (She is rather controversial & if you're easily offended maybe don't listen - she's very much an acquired taste/experimental artist).

Other than that, nothing new here. Plodding along, packing boxes, house hunting, painting, checking on my friends who are having a rough time. My colleague bought me a cat paint by numbers - I'm quite enjoying working on that. Might chuck toiletries in my overnight bag ready for next Friday in Manchester for Fontaines DC (also controversial but not in the same way as Ethel).

@EachandEveryone hopefully you can continue the immuno 🤞. How do you feel in yourself?

@PrincessFluffyPants is it the Ribo making you feel rough? I haven't had anything much in the way of s/e's from Abemaciclib. I'm intrigued by the grounding sheet - will try and remember to google later on to see how that works. Unlikely I will - I keep meaning to look up how anti sickness tablets work & never remember.

@Enigma53 fucking scanxiety is the worst.

@GoldenDog1 what happens after their "gold standard" 8 cycles then!? I'm totally with you on being treated as an individual person, not a number/statistic. It annoys the fuck out of me when they treat us like they're reading off a bloody script & then they're surprised by "erm...no. That doesn't work for me. You need to do the best for me. Not according to some research that's maybe out of date by now & doesn't reflect my situation.

I'm apparently feeling ranty today...

Anyway, washing won't peg itself out in the sunshine 🙄 . Best get dressed when that's done & carry on with my clear out.

PrincessFluffyPants · 08/08/2025 10:40

@Enigma53 I've just read that you say Ribociclib helped with your mets and I feel so much better for you saying that. Honestly, it was the boost I needed to hear today. I'm so sorry to hear the sarcoma decided to be a knob and show up and cause trouble. Sending keep strong vibes.

The pain is in my boob (two areas), neck and chest bone, pretty much where all the tumours are, and as of yesterday evening along my left jaw although it seems to jump across from one side of the jaw to the other. It's difficult to tell if my lymph nodes are anymore swollen than usual as from the chest bone upwards they have been in a state of puffiness and one size or another for months now, I'm quite petite and haven't seen my collarbones for weeks (I miss them!). Trying not to think that the cancer is spreading upwards towards my jaw/head/brain and I made the decision weeks ago not to investigate the possibility of it happening. Ribociclib for the win!

Regarding the grounding sheet, I'm really not sure and I don't want anyone to buy one on the basis I thought it worked for a few days. I will take one for the team and reposition it back to my upper torso for a few more nights and see if I notice any changes again and then report back early next week .

Enigma53 · 08/08/2025 10:56

@PrincessFluffyPants yes ribociclib has an excellent reputation. It wasn’t that long ago that it was a trial drug. I had a huge pleural effusion in left lung in February 2024; could hardly breathe, had it drained a couple of times. By May 24, the fluid stayed away and scans showed a complete response to treatment. Have faith girl, it’s a fab drug!
Hopefully treatment will kick your cancers arse and you will feel more comfortable soon. They even offer ribociclib for extensive mets. I think all the “ ciclib” drugs are pretty good.

Yeah, “ Davros “ the sarcoma. Work of the bloody devil!! 😈

SewingBees · 08/08/2025 13:06

@PrincessFluffyPants Can you ask your GP for zomorph (slow release morphine in tablet form). I found it much better than oramorph which was too spiky in terms of pain relief for me.

Ribociclib is keeping my spine mets stable but not actually shrinking them. But I'll take that.

OP posts:
GoldenDog1 · 09/08/2025 05:16

@lucysmam at the time they said after 8 cycles it would just be a case of wait and watch.
A rather dangerous game to be playing with someone who's cancer is described as aggressive and fast growing but was also tolerating the chemo really well.

Enigma53 · 09/08/2025 20:33

How are you @EachandEveryone?

EachandEveryone · 09/08/2025 22:03

Awful. Moved to the gastro ward on third day of steroids and normally this would be reviewed. I cannot believe the bad luck I’ve had it’s been one thing after the other. As soon as I eat I’m passing water. They’ve started me on antibiotics as well. I’m supposed to be in wales on Wednesday I’m heartbroken it was going to be lovely.

I just hope I can continue with immunotherapy.

EachandEveryone · 09/08/2025 22:04

Awful. Moved to the gastro ward on third day of steroids and normally this would be reviewed. I cannot believe the bad luck I’ve had it’s been one thing after the other. As soon as I eat I’m passing water. They’ve started me on antibiotics as well. I’m supposed to be in wales on Wednesday I’m heartbroken it was going to be lovely.

I just hope I can continue with immunotherapy.

Enigma53 · 10/08/2025 11:16

Oh no, poor you. Can you not keep anything in at all? I know what you mean re: missing out on stuff. My FB is full of colleagues and people on their summer holidays. What am I doing? Yeah, Total shit isn’t it 💕

lucysmam · 10/08/2025 18:56

@EachandEveryone was that for Green Man? I'm so sorry you won't be there - it looked so so good! How do you feel in yourself?

EachandEveryone · 10/08/2025 21:51

Gutted I feel like the exploding femoral artery and ten weeks in hospital was enough to finish me off but it didn’t and I was just doing so well with my physio etc then this bloody happens after only three goes. I miss my cats and it’s so hard on yr own organising things and I’m terrified the council are going to give me a massive carers bill because I didn’t have chance to fill out their forms where they want to know every bloody thing about you

Enigma53 · 10/08/2025 22:00

Is there any sign of improvement @EachandEveryone?

Enigma53 · 10/08/2025 22:02

Scan tomorrow.
There’s nothing fucking like it, when you know things are worsening.

Only S4 peeps will understand the sheer terror .

EachandEveryone · 11/08/2025 10:13

Yes I think there is as it’s changed colour. I got up this morning and couldn’t get there in time I had to drag my drip stand and push things out of the way. Luckily I had a nappy on. I’m so humiliated. My niece has gone back to St Andrews via my sisters in Yorkshire. She was so helpful and seemed all grown up all of a sudden. I will miss her.

good luck today. I think they will put the camera up me later.

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