Stage 4 cancer... ? incurable? Thread #2 is here. In memory of our inspiring, lovely mowly77

[Tilllly]

New thread
All welcome, reluctantly

@SewingBees I've tried to explain it a little, to DH, and his face immediately fell and he looked upset, so I put a big fat smile back on my face, changed the topic and suggested we order a celebratory takeaway. (He's a foodie, that immediately distracted him.) I don't think my family can handle it. They just heard, "The surgeon is very happy" and then stopped at that part. I wish I could do the same, really.
Maybe I do need a counsellor. There was a Penny Brohn lady at the cancer centre where I had my chemo in 2020 who was kind of helpful. I'd need someone more local now, but this is a very solid suggestion.

@WrenNatsworthy That's just so bloody hard. I've nothing helpful to say, other than: I see you, and I hear you, and I hope someone more knowledgeable can chime in to support.

Oh @WrenNatsworthy I'm sorry you are not doing so good.
Do you know why you are so sleepy?
I mean are you feeling down or is it physical or both?
I hope you feel better soon xxx

@GoldenDog1 Thank you so much. Yes, I do think the counsellor idea is solid. I will ask around.
I think there are probably two things coming together that bother me. One of the psychological impact of knowing that there's a tumor still there, eating away at my skull bone. The other is the aftermath of the treatments. I'm really struggling with bone and joint pain from the hormone suppression (but am too scared to stop meds or change to something that might be less effective), my sinuses are a huge mess from brain surgery (endoscopic, through the nose), my right eye got damaged in the surgery. It's just so hard to feel positive when you're in pain.

Awwww yeah you have been through a lot already so you feeling the way you do is very understandable.

On this thread we are all in a similar position and we do worry, it's just the way it is for us all sadly.

I have therapy through occupational health and I find it really helps me.
I can say things to her that I can't say to my family. We also have a good laugh too which helps a lot.
I've only got 1 or 2 sessions left with her and as occupational health have already extended my sessions I won't be offered any more.
I'll definitely be looking for therapy elsewhere though.

Definitely try and take any positive news as a win along the way as I find that helps me also.

Let us know how you get on xxx

@WrenNatsworthy id gladly take your hand and go into the sea with you, Wren, some of these days lately have been ungodly hard and Dignitas is starting to sound like an intelligent option. When you feel terrible, can't eat or sleep. And it seems like it's never going to end, never improve then yeah....the despair sets in.

Addressing the pain and getting that under control is key, what are the plans for that? Do you have access to palliative or hospice services in your area separate from the hospital? They signed me up already for hospice access as hospice have the best out of hours drug access, even though I'm no where close to needing it, and it doesn't need to be for end of life pain control either My nurse put in the paperwork but I think you can go through your gp too.

Was all set for my first chemo to start today when I got pulled up on a very low potassium number, so I had that for 4 hours instead and am now up waiting for the drugs to address the awful muscle soreness as it putters around my body. Two more hours of it tomorrow and then chemo Thursday now. So essentially another week at the hospital cause its so fun!

But, what really gets me is I specifically asked my fancy pants consultant in our Friday call last week, should I supplement potassium over the weekend since low K has been an ongoing problem and I have this giant bottle from 4 weeks ago anyway in thr house.... Oh nono, that shouldn't be necessary.....

I insisted scheduling work to my hair cut appointment tomorrow though. I wasn't sacrificing that, damnit.

@HerbalRefreshmentt sorry to hear your chemo has been delayed. I hope the potassium helps with your muscle soreness.
Enjoy your time at the salon.

@WrenNatsworthy how are you feeling today? I'm hoping you are feeling better, even if just a little bit.

I had my chemo yesterday and slept through most of it. I usually nod off for a short period because of the Piriton they put through first but yesterday I was completely out of it.
When the nurse woke me up I had dribbled all over myself. Embarrassing!

I still haven't seen or heard from my specialist nurse about this lump I have. No surprises there 🙄

I'm sat here thinking about those first few seconds after waking up when everything seems normal before I remember what is happening to me.
Even when doing things to keep busy cancer is always hovering somewhere in the back of my mind but those first few seconds are wonderful as cancer is nowhere to be found.
I wish I could bottle those first waking seconds.

Hello everyone. I've been in hospital again after a trip to our local cathedral ended up with me nearly fainting. We did have a wheelchair but I walked up a few steps to see a tomb, and then the world span.
Ambulance came in an impressive 24 minutes, i was taken to a hospital further away because my local was on divert. 2 bags of blood and came home yesterday morning.

Anaemia makes me depressed because i can literally feel my life force leaving me, like the podlings in The Dark Crystal.

I read that only 7% of stage 4 cancer patients get treated for anaemia. Someone is helping me live. I need to get to 4th July, so I can see DS in his prom suit.

Taylor Swift in August seems like a lifetime away.

@GoldenDog1 Don't be embarrassed about a little dribble my dear. All the best people do it! I usually wake up feeling dehydrated most mornings and busting for a wee, so it's straight to the commode and back to bed for more sleep. I think I'll be more cheerful today, it's a lovely day. DH has the day off so I won't be lonely.

Ooh I've got a few lumps under the skin on my back, they've been examined by various practitioners who just tell me to ignore them. Helpful.

@HerbalRefreshmentt we really do know what we need don't we,? I'm glad you're getting out for a haircut, that's always a mood raiser.

Hi all
Have hospital-acquired pneumonia
And
Some fucker has nicked my handbag
The lord giveth and the lord taketh away

Oh fuckin hell@LuciaPillson Anything irreplaceable in the handbag? And presumably IV antibiotics for the pneumonia? How are you feeling.

Oh fucksake @LuciaPillson
What a bastard of a swap.

@TwigTheWonderKid iv and oral antibiotics, now. Own fecking fault for not sending all that stuff home. Address id plus keys so family are going through tedious process of getting locks changed, it has to involve the board of directors of the flats. The id I'll need to get new financial cards is stolen.

@WrenNatsworthy yes I'm not best pleased 😡

Oh @LuciaPillson that's fucked up.
Not even safe from thieves while in hospital 🤬.

Sorry to hear you have pneumonia, I hope the antibiotics are working x

Who the hell steals a handbag from someone in hospital? I mean seriously. I know they have the safes and all but still, thats some low, low shit. I hope things in there were replaceable @LuciaPillson and you get better soon.

Swings and roundabouts here - got amazing news Im now HER2+ after that bone biopsy so that opens up the H/P and PHESGO lines for me, which I was supposed to start with Taxol. Oh, I started Taxol then immediately stopped it with a severe allergic reaction and the bone pain from my hip was off the charts bad. They got me calmed down in about 20 minutes with a load of painkillers and a valium. Going to restart with Abraxane next week, but it was scary there for a hot second. Finally got my hair cut and now it sounds like I may not be allowed to cold cap (which was totally fine) for Abraxane. F that, already tired of trying to hide this picc line with short sleeves.

Why wouldn't you be allowed to cold cap @HerbalRefreshmentt ?

@WrenNatsworthy supposedly because with Abraxane there hasn't been shown measureable difference so its not on the list of approved chemos to cold cap with, but I dont understand because its the same drug as Taxol just delivered in a different goo. Im going to push hard for it though, I actually found it kinda comforting lol.

Yes, I would feel the same way.

It's been a week since my specialist nurse was emailed about my concerns regarding the lump in my stomach and I heard nothing.
I was in this morning for my pre chemo bloods and the oncology nurses were disgusted that nobody had contacted me.
They sent her a Red alert email while I was there.

I finally got a phonecall from her this afternoon.
She said "oh I believe you were in this morning with some concerns about that lump in your stomach".
I said actually I've been telling you my concerns for a couple of months but you were emailed a week ago about how uncomfortable it's becoming and how anxious it's making me.

She said "oh right well I'll email your consultant now and perhaps he can pop in to see you while your having your chemo tomorrow although he thinks it's scar tissue from your surgery".

I told her that's not good enough as it's because of doctors telling me what they think it is or isn't without investigating that's led me into this whole sorry mess of having a terminal diagnosis and that I want an ultrasound scan.
I still have to wait for the consultant to see me first apparently as he's the one that can order the scan.

I mean I hope it is just scar tissue but I need to know.

Why am I once again having to chase everything and practically begging someone once again to do something?
I've been feeling quite low the past few days and I'm getting tired of the constant worry that I'm just being left again.

I'm cosmically ordering you an ultrasound. It's exhausting being your own admin.

I've been mainly lying about being anaemic, blood test was today, let's see if i need blood this week.

@WrenNatsworthy thank you it worked. My Oncologist is arranging for me to have an ultrasound scan.
Fingers crossed your bloods are ok.

This morning while I was having my chemo I learned my beautiful friend and colleague passed away on Sunday.
My friends didn't know how to tell me because of my own diagnosis.
My friend was diagnosed a year ago and we would meet on Oncology and chat about what the latest shit was going on at work and how shit it was having stage 4 cancer. (we still loved a gossip even though we were off sick).
We were out for a meal not that long ago.
I didn't see her last week as they changed my appointment to the afternoon but I had seen her the week before and she looked so ill.
I still didn't expect this news today.
I finally cried, no I blubbed like a baby in the middle of Oncology but the nurses were lovely as of course they knew her too.
I'm going to miss her so much.
She made me feel less alone if that makes sense.
I'm fucking sick of this whole cancer shit!

@GoldenDog1 , I’m so sorry. Even when it’s expected, it’s hard. It’s too close to home, too.

My results seem to be quickly deteriorating. I have fallopian tube cancer/ ovarian cancer
It’s tracked by Ca125 levels - which have now reached over 1800.
But I feel really well!
CT scan was this morning- so no more maintenance drug for me till they know the result.
If the thing is back so quickly- then it’s bad news for me. Survival is 9-16 months. Chemo doesn’t work well. I’ve been told no trials in UK
I think even harder to believe than at the beginning- then I felt my abdomen was bloated. Just now, I absolutely feel well.
Think I’m typing this out just to make it real for me.
You think surely you’ll get some more time- if you do the surgery and the chemo - but it seems not enough! Cancer sucks!

Oh @GoldenDog1 I am so sorry about your friend. So much love to you. Glad my cosmic order worked! My hb levels are 88 so not too bad.

All my everything crossed for good results of ct scan @RedRosesPinkLilies x

@GoldenDog1 sorry to hear about your friend and I'm glad your getting the scan you need
@WrenNatsworthy I'm glad your HB is playing ball this month
@RedRosesPinkLilies hopefully they won't ke you waiting too long for your results.Cancer definitely does suck x

@RedRosesPinkLilies I will be keeping everything crossed that you have good results from your CT scan & they don't keep you waiting too long to find out.
Cancer does suck!