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

[Tilllly]

New thread
All welcome, reluctantly

@SewingBees I do have good support, mainly from my 4 adult children.
I don't like them to see me like this though so I try to stay positive and focused in front of them.
They know I'm upset but they don't know how anxious I'm feeling.
I'm sure I'll let it all out when I have my next therapy appointment next week.

I think we should all go on that Penny Brohn retreat. It looks lovely.

I'm ok, I'm going to try to 'pop' to a and e for a blood test tomorrow because I think I need a bag of blood. Just call me Bella Swan.

I don't mind what the thread is called. I like a funny long title.

The crapola cancer stage 4 incurable thread. Don your indomitable pants in honour of @Tilllly and Mowly.

@WrenNatsworthy excellent title.
Hope A&E is helpful

@WrenNatsworthy works for me too!

How is everyone? I'm having a 'Why me?" moment. Really struggling.
Hospice counsellor cancelled yesterday because she had a cold.
Blood results came back at 76 so I went up for a transfusion. They did a blood test at Same Day Emergency Care and it came back at 82, so they refused it as the cut off point is at 80.

I've got a brain scan tomorrow to see if cyberknife worked. They called to see how I am. I said just as rubbish! They said they'd see me on Friday for blood test and obs so that's good.

I'm having a "Do they give a fuck about me?" moment.

Been off treatment since January. Was supposed to be rescanned in April with review. Things got complicated by me asking for a referral to another hospital for potential surgery. Trusts are apparently incapable of sharing the fucking paperwork they need, or chasing it up and I've been waiting almost a month for an appointment to see my oncologist following the appointment at Imperial. Finally got appointment tomorrow but oncologist has been ill so it still might be postponed.

I am just so furious that they have dragged their heels so much and exhausted at the amount of chasing I've had to do. That should not be my job.

I've had awful diarrhoea since I was in hospital which I thought was antibiotic related but still hasn't gone away and now everyone in the house has got this awful fluey virus and every time I cough I'm worried I'm going going to poo my pants.

Apart from that, everything's great.

@WrenNatsworthy how long will it take to get your brain scan result?

Oh @TwigTheWonderKid that sounds fucking awful, I'm so sorry. You've not caught norovirus or cdiff have you?

No idea re scan results, I think the anaemia will get me first anyway. I'm not showing any symptoms.

@TwigTheWonderKid as a fellow sufferer of hospital-induced antibiotic overload, I gotta tell you I am still trying to recover from that mess. And I got another whack of antibiotics for no reason last week because 'sepsis protocol' and it reversed all the healing I had done with my poor mucous membranes. Im really struggling with getting my mouth back in shape with sore gums and just general unpleasantness making it necessary to drink something every few minutes. I never want to hear about antibiotic resistance fears ever again after enduring however many needlessly for a month and a half. And then they just leave you to pick up the pieces!

You may want to get that diarrhea checked out though, Wren has a point about possible c. diff. Also the risk of dehydration and your bloods being thrown out of whack.

Im sick of this crap weather, Im sick of feeling sick, Im sick of my lack of mobility, and Im sick of being unable to eat or sleep to any satisfactory level. Ability to cope = 0 today.

Of to see my oncologist this afternoon , I've got a stinking cold some kind of infection that required a trip to hospital and iv antibiotics yesterday.
The last thing I need is a oncologist visit to find out what kind of new hell I'm facing.
I'm also sick of this crap weather.

How did it go @Florsilvestredelcampo ?

Another day of struggling to eat. Going to try rice and beans today and see if that works since bread tastes bad. Im physically improving but being sick after every meal and not wanting to eat is getting tough. Yet somehow all I want to do is watch Masterchef or My 600 lb Life?!

More chemo starting next month that wasn't a surprise, but he wants to go back to carbo/paclitaxel. That was a surprise and means hair loss😢 Oncologist wasn't happy to delay until after my holiday but has agreed to bring cycles 1&2 forward and delay cycle 3 to accommodate my holiday. Obviously he needs to be happy with my bloods in between times so fingers crossed everything behaves .
So my indomitable pants are completely broken but the elastic is sagging a little! I knew I was tempting fate booking that hair cut🙄
Thanks for asking @HerbalRefreshmentt and I'm sorry your struggling with eating would a small selection of tapas type dishes help or the beloved mumsnet picky tea?

@Florsilvestredelcampo concentrating on the positives - our cancer has an 80% chance of responding to Carboplatin/ Paclitaxel.
hairloss is a pain, but your cancer might be kicked into touch for a while
Here’s hoping xxxxx

@RedRosesPinkLilies your right it's aggressive treatment but I responded well to the combination last time and actually I found my side effects quite manageable. I always thought I kind of rocked the cancer beanie turban look. It was worse when my hair grew back very curly and I looked like a 70's footballer, then Tory woman in the Thatcher era!

Ps when do we know when it's time to start a new thread?

@Florsilvestredelcampo think we get 40 pages per thread.
i too rocked my many chemo scarves!
My fear is my cancer has returned, but I’ll be deemed platinum resistant- the chemo they use then only has30% chance of working
But that’s still one in three 🤞

Cancerland…swings and roundabouts!

Jelly? It's the one thing I can eat when nothing else will go down.

@RedRosesPinkLilies someone has to be the 1 so why not you?
I was reading about this trail yesterday ,

A trial to test the effectiveness of Pressurised Intra Peritoneal Aerosolised Chemotherapy (PIPAC)
It's for people with abdominal mets and they spray it directly on to the tumour via key hole surgery (I'm massively simplifying the process i'm sure ) I also like the imagery of the surgical team with a massive can of cancer repellent!
It's only available in Wales at the moment the article is on the Ovacome site

Hey folks, couldn't post as could not find bloody I'm watching bit
Dunno if cancer brain, phone or what
Have been in 2 hospitals and got covid
@GoldenDog1 so very sorry about your friend
@WrenNatsworthy is there something that builds blood? Food wise or idk . Hugs to you
@HerbalRefreshmentt I'm not meant to have much sugar but sometimes only want yogurt or such and not the ickky proteins on hospital tray
@TwigTheWonderKid I know of some of your struggles and am sorry, did not know about latest virus or diarrhea causing illness and am even sorrier
@Florsilvestredelcampo ooh yeah cancer repellent spray I think good idea

@Florsilvestredelcampo pack your bags, we are moving to Wales! X

@WrenNatsworthy so sorry you are feeling down at the moment.
Hope all went ok with your scan.

@TwigTheWonderKid It all sounds like absolute incompetence to me. It's disgusting you have had to wait this long for an appointment.
I'm afraid I've had the "do they give a fuck about me?" moments right from the start of this whole sorry mess and considering the lack of care I received/didn't receive the answer is a firm no, no they don't!
I hope you are feeling better and have the diarrhea under control.

@HerbalRefreshmentt I'm sorry you are struggling to eat anything without being sick afterwards.
Unfortunately due to my cancer being in my stomach and causing a blockage I spent most of last year throwing up.
It's exhausting so I feel your pain.
Do they know why you are being sick?
Can they prescribe Fortisips or something similar to help keep your strength up?

@Florsilvestredelcampo I don't know about Carbo but I'm on Paclitaxel. I was told I would lose my hair again but I'm about to start my 6th cycle on it and so far I've kept my hair and it's even growing a little (touch wood). I have however lost my eyebrows and eyelashes.
I hope all goes well with your treatment.
I wonder if that PIPAC would work directly on a primary tumour in the stomach.
I'm going to have a read up on it and then I'm going to mention it to my Oncologist to see what he knows about it.
@RedRosesPinkLilies
Keeping everything crossed your cancer hasn't returned.
Can I come to Wales too?

@LuciaPillson thank you.
It's my friends funeral on Thursday and I'm dreading it.
I'm back to the chemo on Tuesday so may be feeling a bit shit on Thursday but I'm determined to be there.
I'm sorry you caught Covid. I hope you haven't been too bad with it.

I've been away glamping for 4 days. We had 2 days of great weather and 2 days of shit weather but it was still great.
I stayed in my pod all day Wednesday as I had woken in the early hours throwing up.
I was worried as it was just like mucus stuff that was coming up but after a day of total rest I felt much better.
I think I've somehow pulled a muscle in my chest on the way home yesterday and I've been in agony with it.
At first I was questioning if I was having a heart attack but now I'm pretty sure it's a muscle as the pain is worse when I cough, bend down or lie on my left side.

I got home yesterday to a letter telling me my ill health retirement has been accepted.
Literally 5 minutes later HR rang me to check I had received the letter and to tell me they were emailing me another 2 forms that I need to fill in for it.
I can't fill one in until I've had a final case review meeting with HR and my manager and they give me a termination of my contract date.
I said to her I'll be dead before I get it with all this form filling.
I'm sick of form filling and everything taking so long.

Anyway sorry for babbling on.
I hope you all have a good day today.

Mumsnet Stage 4 trip to Wales
we’ll all turn up and demand treatment 🤣

As the crow flies Cardiff is only 20 minutes away from me but if you don't fancy a dip in the Bristol channel we can take the bridge . You can stay with me

@Florsilvestredelcampo that’s not far at all! Worth asking for a second opinion?

@Florsilvestredelcampo I'm so sorry to read your update and hoping the side effects of your treatment are manageable again Xxx. I seem to remember you claiming ESA? I have been in the ESA support group since January 2021 and my only communication with them was a telephone interview in November 2021 which apparently should have been done before I started getting the benefit but Covid delayed it. I'm wondering if you have had any reassessments since starting to claim?

Hi @Fantasea how are you?
The only contact I have with ESA is when my NHS pension pushes me over the the earnings limit and they make deduction in the amount they pay me. Other than that they leave me alone