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

Day 3 : Feeling feeling like death 🥺
Nausea and achy.

@batterychicken I'm sorry to hear about your nan.
You did the right thing.
People have to understand how dangerous it can be for chemo patients to catch something like norovirus.

@Enigma52 sorry you are feeling so shitty.
Make sure you are getting plenty of rest.
I hope you have been able to get some relief from the constipation.

Remember the meeting I had last year, where they promised to make changes?
Some of those changes were about documenting things correctly as there were some very big mistakes in a lot of my clinical notes.
Well, I requested my CT scan results from the hospital, going back to 2023.
I wanted to learn more about them, to try and understand them a little bit better.
I received them yesterday.
Imagine my surprise when I read my last scan results which state I have metastatic Oesophageal cancer.
Nope, I don't have Oesophageal cancer, and I've never had it.
WTF?
Obviously whoever dictated that report didn't bother to actually read my medical notes correctly.
Nothing new there then 🙄

@GoldenDog1 that's fucking shocking re: your notes! I mean, really?? Not even a correct diagnosis! It's beyond belief, but sadly, doesn't surprise me. Where did they get oesophageal cancer from??

My negligence case continues. My solicitor phoned Friday and told me they were struggling to obtain my notes from the hospital which fucked up. Apparently there's a 10 week back log. They must be dealing with alot of complaints then! The good news is, that my 3 year time limitation resets from November 24 ( the time I was made aware of the negligence) to November 27. Obviously I have no idea if I will even be around by then, but hey ho!

@GoldenDog1 Thats actually unbelievable
Who are you going to raise that with.
It always worries me that they’ve mixed up patients when things like that happen. What else has been done incorrectly?

@Enigma52 - sorry you’re feeling crappy.

I’m tired today. A lot of resting- which is annoying me!

Exactly. Got SO much to do and fatigue is flooring me!

Hello can someone suggest some practical ideas when supporting someone going through this? And supporting their family members?

I assume that you are asking as you are supporting someone with cancer and I'm sorry to hear that. There are places on mumsnet that can support you with this I believe the thread is called the storm. Outside of mumsnet McMillan,cancer research all have websites that can help.
This is a thread for people with stage 4 we support each other, I hope you can find the answers you need.

@GoldenDog1 that so awful my God how the he'll do they get away with that?
I'm also having a bit of a scrappy day I didn't sleep last night due to feeling so bloated and uncomfortable. So apart from a brief trip to buy my son a new scientific calculator I haven't left the armchair, it's been a beautiful day aswell🙁

@Florsilvestredelcampo yep, I've jumped back into bed. Body aches to the bone. 🥺

I got a phone call from palliative care today and it shook me to be honest. They want to come and do an assessment. I wish they would change that bloody word. I’ve told them I don’t want one and will ring them when I do. I may change my mind. I already have a district nurse and carer every day I don’t want another hcp coming into my flat. Am I in denial? In the hospital I was told they help with pain relief.

my consultant hasn’t got the immunotherapy yet it’s so frustrating as it feels like it’s my best chance. If I don’t have it then what happens?

@Enigma52 I don't know where they have got it from.
Both are cancers that affect the upper GI tract, but they are two different cancers that tend to affect different organs.
My primary tumour is at the lower end of my stomach, so not even near the esophagus.

I think my solicitor has got all my medical notes now.
They emailed me on Friday to say they would like me to make a witness statement to support my case.
Somebody is going to ring me during the week to go through that with me.
To be honest, I've taken a backseat with it all, as there is still the possibility that they won't continue as it is such a complicated case.

@RedRosesPinkLilies I was going to give PALS a ring on Monday, but I might wait and speak to my upper GI nurse.
It needs changing and the correct information put on there.

@Florsilvestredelcampo I don't know how they get away with it.
I mean ,a big running theme through the meeting I had was the fact that so many mistakes, big mistakes,were made in my clinical notes, or not even documented at all.
Promises were made that things would be put in place to stop this happening, yet here we are again.

I'm currently sitting on an ice pack.
I'm not constipated at the moment (for a change) but I have really bad hemorrhoids.
I know they need operating on, but I'm not going down that road.
Instead, I'll continue to manage them with ice packs, suppositories and ointment.

Sorry to anyone feeling crappy at the moment.
I hope you all feel a bit better today.
Sending love xxx

@GoldenDog1 It sounds horrific everything you’re going throughout before you get to the cancer! Just found out that we have one part time oncologist (4 days) and one part time oncologist (1day) for our hospital spanning a population of 300k - no wonder the service is abhorrent!

@EachandEveryone ingot the palliative care call after my immunotherapy failed. Gave me access to better pain killers as the aim now is to keep quality of life for as long as possible. It gives you access to complementary massages, sleep aids and the palliative hotline to the hospitals saving the 111 nightmare. To be fair though it does give you the chance to make sure they know what you want whilst you’re able to tell them eg for me I want to be at home for as long as possible and i don’t want any medical interventions. If you don’t want tk
see them you absolutely don’t have to.

@batterychicken you absolutely did the right thing, your poor nan would never have forgiven herself if you had gotten ill.

Bowels well, in all my days never did i think i would be shoving a suppository into my stoma 🤢 hoping blockage is gone 🤞🏻

My cousin has ordered me some ex lax chocolate off eBay. So, if you all hear a loud rumble, you'll know I've eaten too much!! 🤣🤣
I have actually sorted bowel out. Chia seeds and fresh oranges, with x 2 sachets of movicol: bingo!! ✔️

@Whatevershallidowithmylife suppository in stoma bag?? Oh dear. Has it worked?

@EachandEveryone think palliative care can open up a new world re: pain relief, complimentary therapies etc. I would definitely be investigating what they can offer. How's the ulcer now?

@Florsilvestredelcampo how are you feeling today?

Not bad this end. Have swapped nausea for eye and bone aches! 🙈 My head and eyes feel like they've been tightly squeezed?? Very weird!

Going to make a banana loaf and clean the bathroom I think.

Happy Sunday all ❤️

New day New symptoms! My constipation has resolved it self and has now gone to far the other way!
Nobody apart from me really eats cake in my house so I don't ever really get the chance to bake I hope the 🍌 cake was good.

Right, that cancer forum on MN is pissing me off. People are posting with health anxiety, about things which are more than likely non cancer related. Then stating they are " terrified because they have children! Yep, many of us on here have families/ relatives/ spouses/ partners etc, but we have to deal with it!

I know what you mean. I don’t mind if it’s someone I know as it takes my mind off things. However a work colleague told everyone she had cancer before she even had the biopsy and I was gutted for her planted bulbs and everything to keep myself busy. It wasn’t at all. It was nothing. She’s completely the boy who cried wolf coming out with all kinds of rubbish.

my ulcer is the same I don’t know how long they take to heal it’s 4cm deep, the nurse comes every day but by the time I go to bed it’s leaking so I have to shove a pad down there. It’s not gunky like before though.

i will ring the North London hospice tommorrow as the go is being really stingy with the Oromorph. Anyone else connected to the North London hospice

i was going to try and stay up
for the Oscar’s tonight as I love it. Then I thought is it my last one? Same with Glastonbury this year. I need to stop thinking like this it not doing me any good.

@Whatevershallidowithmylife to be honest, I think I'm just resigned to all the mistakes that happen now.
I see them and just sigh.
Don't get me wrong, I'll be making sure they are aware and this latest mistake is rectified, but I just can't allow myself to get too stressed over it.

That is shocking that there are so few Oncologists at your hospital.
There are a few more than that in my hospital, but the ones that deal with my type of cancer (2 of them) are not based here and only come 1 morning per week.

What is everyone up to today?

@GoldenDog1 not that exciting I'm going to go to Asda it's a lovely day and I need to get out after a weekend of inactivity I need to get out. I'm going to Malaga next week so I need to star planning for that.
@Enigma52 I've just read a thread on the cancer forum 🙄at least the threads presence keeps that kind of anxiety off here!

I've just spoken to my upper GI nurse regarding the incorrect information on my last CT scan.
Turns out it was actually my Oncologist who said I have metastatic Oesophageal cancer.
That's even more worrying if my own Oncologist doesn't even know what cancer I have 🤦‍♀️.
Anyway she said she's going to get it corrected so that going forward, nobody else looks at that report and thinks I have Oesophageal cancer.
I don't even know what to say at this point.

@GoldenDog1 There are no words. I’m gobsmacked. At this point you must have lost a lot of trust in your clinicians.

@RedRosesPinkLilies I have lost trust in them all.
For the first time in a long time, I actually feel a bit upset about it, and very weary with it all.
Usually it's irritation I feel, but I'm tired of the constant mistakes.

I just received some wrist warmers. Those ones that are always recommended on here. I’m not quite sure how to wear them or what difference they are making. My hands are nearly blue they are that cold. Is this the neuropathy?

I've just listened to the recording which took place during the meeting back in November re: my medical negligence case. It was good; i should have been a lawyer!!!! 😆

I've been given some oragel for my Mucositis and I feel like I need to choose between having pain from the numerous ulcers I've got in my mouth or feeling like I've had a stroke as I can't feel my tongue and I keep drooling!

I've spent a lot of the last couple of weeks with my family as my nan had a massive stroke and
None of my family are medical so I was translating dr speak. Then she was on a ward and i couldn't sleep over with my family as there was norovirus on the ward. Then she got sent back to her care
Home to receive palliative care and she died a week ago today. But my family are being all pissy about the fact that I didn't spend hours a day at her bedside.

I had chemo last week during the sit at the bedside but and I felt like absolute shite, as it happens I've caught hand foot and mouth from somewhere and it's so shite. The funeral is on on the 18th so I'll go back to my mums house for that, and I'll stay over for a few days before and after.

Sending love to you all xxx