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

Thanks for the thread Sewing

@SewingBees thank you for the new thread and lovely title.

Thanks @SewingBees lovely title 🙂

Best of luck @AGreatUsername I've everything crossed for you. Are you all packed ready for your holiday?

Blood test arm!! 😡😢

Whoops...

@Enigma52 my goodness, that is some bruising.
I hope you are ok xxx

@AGreatUsername I got my threads mixed up and posted on the last one, but want to wish you good luck for today xxx

Yes, my dad reckons there's some bleeding under the skin. I've sent a picture to the sarcoma nurse to look at.

Stressing over imminent hair loss now. Can't believe I'm going to lose it again 😢

@SewingBees thanks for the shiny new thread.

I've just found out the neighbour of a friend passed on Tuesday 😥. He was always out with ice pops & treats for the kids after school when they were younger, & still stopped for a chat now.

Fucking hell. Pass the wine 🍷

Forgot to ask - will someone add me to fb please? I'm on there more often these days.

Any news @AGreatUsername ?

@lucysmam think you have to share your real name, so we can invite you to the Stage 4 group ( I think!)

I'll message it to one of you?

@lucysmam I've sent you a PM.

So my results were stable. I think.

As I said before, they forgot to order the neck CT so the full body goes up to base of neck.

The report said all measurements of all nodes were the same as 3 months ago, but the clavicle node looked more "prominent"?! Oncologist unsure what that means given measurements were the same!

So, good news overall but I slight nagging worry. I'm to have a neck CT now after holidays. My CA125 was up again from 670 ish to 820 ish. Honestly I just wish it would behave.

How is everyone today?
The sun is out in Cheshire!

I've done a ton of washing, cleaned the spare room, cleaned the bathroom, am about to sort the bunnies and then tackle the bloody ironing pile!! Oh and I cut my fringe. Why? No idea! 🤷‍♀️

Well I’ve just had a to do with the district nurse manager. It’s really not my fault they are short staffed today and it’s not my fault I have an ulcer still weeping needing daily dressings. I can walk but going up and down my stairs is hard and outside due to the neuropathy the path feels like a sponge. Anyway I waited till 3 and rang and asked if she had a clue when she was coming as the dressing was weeping itching like mad and I needed to pop out. I fell right into that trap! So she came and when I was legs akimbo on my bed she said they are only there for genuine bed bound people and she doesn’t understand how I managed to get their service and who referred me, I was fuming if I sent u a picture of how close local Tescos is u wouldn’t beleive it. I live in a flat on a main roads all I have to do is go out of my flat and wait for the green man and I’m in Tescos. So I told her I only wanted to go to Tescos and didn’t want to miss her she was going on and on I was so pissed off I said not only have I got this to deal with I’ve got cancer that they don’t know how to treat next and you expect me to walk for 35 minutes to the gp there and back every single day despite the fact they aren’t even open on a weekend.

anyway, I can’t complain as she is the manager 😀. I must admit I was shocked when the man came today with my alarm I did feel like it was jumping the gun abit. I also have been getting a daily carer for 45 minutes and she’s been a god send and I feel so guilty now but it will stop before long. My family up north said that I would never have got it there. I’m convinced they still don’t realise how sick I am. I feel like a bleeding fraud my friend said I’ll be going for an over 55’s flat next 😀😀

Thanks @SewingBees

@AGreatUsername good news that your scan results are showing as stable.
It must be frustrating and worrying waiting for your neck scan.
I hope you have an amazing holiday.
Please bring us back some warm sunshine 🌞

How is everyone today?

Does anyone know if diazepam makes you sleepy? Am getting into a bit of a spin about chemo this week. Actually it's my hair I'm stressing over and whether chemo will work. I have some diazepam from GP and considering taking it tonight!

@herbal are you okay?

So glad I've been signed off. OFSTED are in this week! Every schools worst nightmare!!

@enigma52 Diazapam won't make you drowsy as such but it generally relaxes you, combine it with some relaxing music or breathing exercises and you should nod off. I cut my below shoulder length hair into a very short bob before chemo started. That way when it started falling out it wasn't long bits of hair and as the cut was so different from my longer hair in a strange way it didn't really feel like it was mine. I did shave it before it started to get patchy and that was it done, ready to start growing back. Will the chemo work, who knows, hopefully it will but all you can do is look after yourself as best you can. Remember to save your stresses for a set time. Glad you've been signed off!

@EachandEveryone God yes, the DN in my area would be the same - good for you for speaking up!

I've got a call with the hospice nurse tomorrow but hoping she'll come out and see me. Need to increase my pain meds again. Also have developed a constant sore tum- just that constant dull ache.My sister thinks I should be getting fentynl patches.Also been referred to physio and gynie- both of which should have been done in May! Good news is my life insurance has paid out so need to redo the bathroom as I can't get into the bath. Seen a P shaped bath which is also a walk in which I think might work. Also looking at a bigger car to transport us all including the dogs, my wheelchair and or scooter. Apart from that it's heating on in this house. DH has been looking at motorbikes 🤣🤣

Been baking!

Coffee and walnut cake and banana loaf 😊

Oh my, send a slice my way! They look fab!