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

@batterychicken you really are having a terrible time at the moment.
I'm sorry you are going through all that.
How is the hand foot and mouth affecting you?

Since I started this chemo, I often have a persistent runny nose.
I know the chemo can irritate the nasal passages, but the last couple of weeks, it has been really quite bad.
My nose is really sore inside from constantly having to blow it.
The humidifier helps a bit, but I was wondering if anyone else has experienced this and if so do you have any tips on how to manage it?

The solicitor called me yesterday to help me with my witness statement.
She's really lovely and we were on the phone for 2 hours.
I found it very difficult and emotional going through everything again.
She said as they now have all my medical records, the next step is for them to get independent medical professionals to look at them.
She has also warned that they may not go ahead with the case because of how complex it all is.
Even though they have admitted negligence in the recording of the meeting, she explained that unless they are practically guaranteed a win they won't go up against the NHS.
Anyway we will see.

It's really still quite cold here at the moment.
There is a strong breeze and it has got quite a nip to it.

I've just had a warm bath.
It was lovely to fully immerse myself in the water.
This is the first bath I've had since having the PICC removed and the port put in.
I loved it.

Anyway love and positive thoughts to you all xxx

@batterychicken @GoldenDog1 I’m sorry you’re both having such a difficult time. Cancer is such a multifaceted disease.
I’ve been in difficult situations with my family @batterychicken - they completely ostracised me for a couple of years and at a funeral either glared at me or pointedly ignored me. (This includes my mum). I’m only saying this to try and give you comfort that you’re not alone.

They’re eejits, good chance they are jealous of your success in life and this is their chance to get back at you. Go to the funeral with your head held high

@GoldenDog1 sorry you continue to have a crap time. Do you think a little Vaseline at the nostril/ just inside the nose would help?

Very difficult that lawyers will only take dead cert cases - medicine is so nuanced and complex that many people must not get justice.

For me - much smaller news. I’m not having chemo this week because the District Nurses kept insisting my drain site was ‘just a bit red and not infected’. Of course it’s infected!! Could have been dealt with weeks ago.
Anyway a week of weekly chemo gives me a chance to recover a bit. I’m tired a lot of the time these days.

@RedRosesPinkLilies thank you, I will give the Vaseline a go.
To be fair, in the grand scheme of things, I'm ok.
I've got a sore bottom from the piles 🙄 my nose is sore, and it's costing me a fortune in tissues, but I'm OK.

Oh and I'm currently walking around looking like Ronald Mcdonald.
I decided I wanted to go lighter so I dyed my hair on Monday ( My previous Oncologist gave up telling me I'm not supposed to, and I have no idea what my new Oncologist would think about it) and it's a complete disaster.
I'm at the hairdressers tomorrow with hopes they can sort it out.
My hair is still fragile, but I've been dyeing my hair since I was 13 and I don't feel like me unless I'm slapping a colour on it.

I'm sorry you have an infected site, are you on antibiotics for it?
Hopefully you can get plenty of rest while you are having a week off chemo.
Xxx

@GoldenDog1 yes - oral and topical antibiotics, and I’ll see the nurses tomorrow

The topical tube of antibiotics is quite small and so I phoned the GPs at 3pm today to ask for more. They were closed. They’d reached their safe practising limit. 🤣
There was a number for emergencies- but I couldn’t justify that.

I just cannot understand the NHS anymore. How can a GP surgery decide not to see anyone else in working hours? There will be someone who is properly unwell but decides not to bother the emergency Dr, and then dies as a result.

I know Drs have been over worked in the past -but this is ridiculous. No business would function like this.

Well I got a call off my gp to say my abbcess has staph in it and thank god I was pushy enough to ask for antibiotics a week ago. I’ve been shivering hot and cold and I’m putting it down to that

i I had a telephone appointment today with my consultant he said he is doing his very best to get the immunotherapy it has to be signed off by a board and then by the pharmaceutical company. I’m still not taking it in. I asked what will happen if I don’t get it and he said no more chemo!!! I can’t believe it and I’m wondering if he just said it because that’s what he’s telling them. He was emailing them as we were talking,

it hasn’t spread but it’s in my lymph nodes and not anywhere else (they can’t find the primary) it’s so unfair. I’ll be doing a go fund me at this rate. Except I’d only get £400 and not £40,000😀

@RedRosesPinkLilies I've never heard of a GP surgery closing because they have reached their safe practising limit.
So not even anyone to answer the phone for enquiries?
That is shocking.
Then they wonder why people are turning up at A&E that don't really need to be there.
I hope you are able to get sorted today xxx

@EachandEveryone I can't believe you are still waiting to find out if you are going to get immunotherapy (well I can believe it actually).
Are you still shivering hot and cold?
If so I would be contacting your chemotherapy unit or the chemotherapy helpline. Xxx

I've got a phone call with my oncologist later this morning. I'm pretty resigned to the fact that I will be starting more chemo I imagine he will want to organise a scan first. I maybe imagining the worse but after a while we know don't we?

Well an hour after my phonecall I was sat in same day emergency care for assessment . They think acities, possible bowel obstruction and my ca125 has shot up. I will post more later.

I’m sorry @Florsilvestredelcampo , I hope you get sorted and comfortable. I’m glad they are on it. I always feel connected to you since we have the same sort of cancer and you were so kind to me in my early days.

Nice bit over, now I shall rant 🤣

Im meant to be on weekly chemo - cancelled last week because I have a wound infection. Seems next week is cancelled too and I am on a waiting list for treatment!
Its very likely this wound infection will be fine by next Wednesday
Couldn’t they have kept my appointment and waited to see?
Dealing with the NHS is actually worse than coping with cancer. I wish they realised that.

O.

M.

F.

G.

I give up.

Genuinely baffled by the total ineptitude of the CT dept & oncology atm. CT want me to ring them...and stay on hold for as long as it takes for them to answer...erm, no, I have limited time...I'm not sitting on hold for hours ffs. I'll choose how to spend it & sat on hold just doesn't do it for me. Just make me an appt & I will email to change it if it's not suitable. Then you can ignore my email again & tell me I didn't go, again.

Onc rang me at 11 am for a 1pm appt. Fucking brilliant. I'm in class then. We can't have phones out without permission. & who the fuck is waiting for a 1pm call, at 11am?! Dicks.

I have said this in a much nicer way to the BCN who text me that CT want me to hang about on the phone. Not that anyone pays any attention whatsoever!

Anyway, hope you're all ok. Sorry for the moan. I need to catch up properly really rather than just jump in for a whinge!

@lucysmam I think that warrants a report to PALS. Without that these people/departments will just continue behaving as though their patients are there to be at their beck and call (no pun intended).

Funny day today. Nice enough to have the doors open to let some fresh air in and hear the birds singing. Completely let down by a cleaner I booked in over a fortnight ago. I may have dodged a bullet because they seem to be a complete Muppet. Crazy busy work week, including an interview for an internal promotion (waiting to hear back), and I've been interviewing new people for my team. And this morning I got called a stupid bitch by someone who blocked me in (in the disabled space mind) in the school car park. I just laughed.

@Florsilvestredelcampo oh gosh, how are you getting on? Really not bowel obstruction. Xx

@RedRosesPinkLilies Huge sigh! Why did they cancel next week's appointment too? Seems a bit premature? Half the mental load which accompanies cancer, is the dealing blooming NHS, the very ones who are keeping us going!

I may ( or may not have ) mentioned, that I ( like @GoldenDog1 ) have a medical negligence case going, against my hospital trust ( Mid Cheshire) I was informed last November that my breast surgeon had been struck off, due to gross misconduct and negligence. However, thanks to the internet, I have since found that he had been causing chaos up and down the bloody country; mutilating women essentially.

What i didn't know until today, is that my solicitors, are also dealing with a number of cases ( including mine) who suffered at the hands of this man. Quite unbelievable really!

And I still have no idea how to edit on MN! There's no edit function?

Just waiting on ward to see drs after my scan to find out results. U.S shows some fluid but sonagrapher doesn't think there enough to warrant a drain. But she did say if that changes they will do the drain.
I'm in a 4 bedded bay it's not so bad nice views over the city of Bristol though.

If you log into the desktop version you can edit but not on the app.

Thank you for the lovely support this week. I've decided to fuck them all.

I have been horrifically constipated this week to the point I've resorted to suppositories. I don't want to be graphic but if someone had turned up with a camera I'd have stuck a blanket on it and posed for a photo with it.

I feel about 10 stone lighter

@batterychicken I know it might not be enough for your mouth ulcers - but Boots do lozenges for the ulcers. Might reduce your need for oragel?

The images are under review

Think it’s called Mouth Ulcer Pastilles and is in a blue box. I like them and find them useful, but don’t get loads of mouth ulcers

Ah that looks amazing thank you!!

Not my bowel but lymph progression.Fluid not draining from my kidney so bladder scan tonight catheter and possible nephrostmy(sp?) tomorrow

I hope it's ok to continue to whinge here. I was in the shower after sending my husband out to get all the medicated throat and mouth things he can find at boots but specifically ones that @RedRosesPinkLilies suggested. He came back and I had one and it was such a relief I cried in the shower.

I haven't felt like showering in a week so it was a long time coming. In my shower I did a proper scrub it's was an everything shower as the kids of
Today call it.

I found my scar under my arm from my lymph node clearance for melanoma in 2023 now has magically become swollen and hard. Imagine my surprise. Will speak to the cancer ward tomorrow but I'm not going to lie after being so constipated I felt like I gave birth this afternoon and having so many ulcers in my mouth it hurt to speak and eat, this was the icing on the cake and I raged and screamed at nothing. I'm so fucking fed up.

Anyway I will go to bed now and deal with the lump like an adult tomorrow but in my anger I just thought fuck it I could cut that out. It's been so long since I've been at work I miss it so much. I might speak to occupational health and see if I can go back to work and do my job as a surgeon again. I miss being me.
I miss my colleagues treating me as a person not a Patient. Because I don't even get that. I get the medicalised version of it with no sugar coating at all.

@batterychicken I’m so glad the lozenges gave you some relief.

I’ve posted a longer reply on our facebook group. I felt it was too outing for here - in case any real life friends recognised themselves

@Florsilvestredelcampo how are you feeling today?

@batterychicken I know what you mean about work and people. I feel life has been dominated by health shite of some description, forever. I hope you manage to get back to work soon. I think psychologically, it can help alot. Maybe you could do reduced hours or wfh a bit?

I think it must be tough being a surgeon patient. I can well imagine you are on the receiving end of hardcore medical talk, minus any sugar. I've had that a few times too ( I'm a TA in a school FFS!) and have no idea why. Probably because I take a notebook and pen to appointments? 🤷‍♀️

Oh well, better start the day. Scan on 29th March, a month early. I will only have had two chemo sessions. More shite news no doubt!

Another week of hair and that will be a bit more of me gone! Can't fucking wait!! If ANYONE dare tell me I " nice shaped head" I won't be responsible for my actions!

I’ve now got a distinctive lump on the right side of my groin. I can only think the worse because I know it is. I really need to crack on and get the immunotherapy

Old " friend" who I thought I'd blocked, has messaged me to say she is on holiday ( near me!) and did I want to meet up? Not really. Nothing to talk about. She's not rung me once since this shit storm descended!

I'm ok today just waiting to hear if what the plans are