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

@Florsilvestredelcampo how are you getting on? X

1230

Definitely phone the helpline! I’m ok. My most recent pet shows reduction which I’m really happy about!!

Sooo, when I queried it with the lady on reception last night, I was right. I should indeed have been offered a more convenient appointment than 7pm. She did explain that some clinics have certain slots pre-booked but there's definitely wiggle room if it's not suitable.

The lady in the CT also confirmed it & advised that I contact PALS - who are yet to answer my email. So, I shall follow it up once I've found the call back to them in my call logs. Hopefully that way the person I dealt with will be properly informed I do make myself laugh.

@sellotapechicken hurray for reduction 🥳. I always just get "it's stable"...I can feel that it's smaller 🙄.

@EachandEveryone I hope today goes smoothly for you & they don't mess you about too much!

@sellotapechicken that's great news. So happy for you xxx

@lucysmam I'm the same. I've only ever been told "it's stable" but I'm OK with that, considering at the start my team were not particularly optimistic.

@EachandEveryone good luck for today.

I had my telephone Oncology appointment yesterday. It lasted about 5 minutes.
I did try to ask him if there is anything we can do to try and shrink my primary tumour.
He started waffling on about the CT scan can only show so much and the only way to tell if a tumour is dead or alive would be with biopsies (he was not offering to do this)
WTF? Dead or alive, is that a thing?
At this point, I just said thanks and bye.
So I didn't actually get an answer, just a load of waffle.

I recently mentioned I had written to request my hospital medical records.
I received the CT scans a few weeks ago now.
Yesterday, I had an email to say they have now got the rest of my records together (everything to do with my cancer diagnosis and hospital stays during 2023).
They have just emailed again to say they are going to hand deliver them to me this morning.
I think that is very nice of them.

Love to all.

Did you get your immunotherapy @EachandEveryone?

@GoldenDog1 that was a short and sweet phone call with the oncologist. Never heard of a “ dead” tumour? Is that the same as inactive?

@Florsilvestredelcampo hope you are okay?

@sellotapechickengreat scan news. Is that melanoma or sarcoma?

Pretty fed up this end. Mouth still giving me problems, tired, achy, just “ meh”
I feel really far removed from work now, just couldn’t give a toss. I feel just a number now.

Time to find mint free toothpaste!

Yes I did thank you. I’ve lost 10kg since t hi is started over two years ago. Anyone else?

@EachandEveryone mines is a steady drip but it just soaks through dressings so then the trouser are wet etc. Hopefully yours will heal with the packing tho!

@Florsilvestredelcampo We got a lawyer to do our wills, POA, and advance directive at the same time but this was about 10 years ago now so price probably not relevant but £750 all in. I have mine all registered with the hospital, particularly for the AD. I'm also doing a 'respect' form with the hospice - where I want to be at the end if possible (for me it's home) but there have been a couple of things happen where I think maybe I would be better in the hospice but no rush to finish this form.

@Enigma53 that sounds so sore for your mouth - what are you taking?

Sarcoma. Melanoma is mainly gone (thank god for immunotherapy) I had an awful response to the first line of treatment, but the second one has been ok, it’s a longer chemo so I go home with a pump but it seems to be doing the job. Not going to lie I feel shit for 3 weeks ok for 1 and then back to chemo.

I use Hismile from boots in a variety of funky flavours and when my mucositis is being a bitch I use mouthwash with lidocaine in it. It numbs the entire mouth. They also prescribed me lozenges as the back of my throat is horrendous too.

Tomorrow call the hotline and say you urgently need to be seen as you’re struggling to eat and it’s impacting your mental health. Those are the key words that got me all the decent stuff prescribed. They should just give you this shit at the beginning and top it up at the chemo appointments.

i have to say that seeing the chemo and sarcoma teams from a patients perspective is eye opening and I have written to patient experience to explain all the things that as a nationally recognised cancer hospital it isn’t good enough to have clinic running 1.5 hours behind and not explain to patients why. It also isn’t good enough to let someone get to chemo and tell them the bloods they had for chemo clotted so they can’t have treatment until they take more bloods and it’s too late now at 3pm. Tell them to come in earlier, I’m surgical but I get notifications when patients bloods are back because I need to check there stable pre and post op.

I hope everyone is ok. @EachandEveryonehow did it go today? My dog is home now :) looking very sorry for herself

I did start my immunotherapy yesterday thank goodness. They were rushed off their feet and there were people there that had been having chemo last year. We all looked abit crap!

I’ve just spent £350 on my Glastonbury balance I don’t know if I’m being deluded or what!

I’ve been booked in for what I like to think is an eyelift in three weeks but I’m wondering if I should cancel it or if they will let me have it in a couple of months. I will ring them later.

your doggo is beautiful if I didn’t have so many cats and live in a flat I would get one. Well not at this time. How long was it before your immunotherapy started working? How could you tell? Did you have an echo before hand? They are booking me in for one.

@Enigma53 I'm doing ok at the moment but I've got chemo on Friday so no doubt I'll be knocked back again. I'm having a picc fitted today, last time I reacted badly to all the dressings but I've got Allevin on my back and it's been ok .
I'm sorry to hear your having so much trouble with your mouth it sounds so sore.
@Whatevershallidowithmylife Thanks for the information on POA I will look into that. I'm also leaning towards hospice care It is just not practical to be cared for here.
@sellotapechicken my big bug bear about HCPs is that they seem to see you just as a cancer patient with symptoms that need to be solved. I was a psychiatric nurse so I do understand a lot more than they think But it seems that's never taken into consideration. I'm not even there is any info about me as a person in my notes.
The lovely weather seems set to continue so I hope we get to enjoy some of that.

It was pretty much instant for me. Everything got bigger which freaked me out so much but once was convinced it was pseudoprogression which it was & within 3 sessions it wasn’t even palpable. Yes I had an echo

@Enigma53 I have no idea if it is the same as inactive.
I've never heard anyone talk like that before.
I don't know about anyone else, but what I find is, when they ask "do you have any questions for me?" and you then actually ask a question, they look shocked (or sound shocked) and don't know how to answer.
No matter how many questions I ask, I never seem to get a simple, straightforward answer.

I also use the Hismile toothpaste.
I was sceptical at first because of all the weird and wonderful flavours.
I suppose that is just because, for most of us, we have only ever had mint flavour toothpaste.
My current favourites are Cherry flavour and Wonka Chocolate flavour.
They taste lovely and leave my mouth feeling surprisingly fresh.
My mouth can't tolerate the mint toothpaste anymore.

Does anyone know if immunotherapy makes you cold? I’m under my electric blanket shivering and also have neuropathy symptoms on my hands.

It does but it can also give you a temperature so check that!

Definitely get checked out @EachandEveryone

It’s doing both but I only had it yesterday! I’m more concerned about this open wound as I only finished the antibiotics today

What’s the wound doing @EachandEveryone? Maybe call the hospital hotline if you are worried?

Hows everyone else? Think my mouth is finally calming a bit, thank fuck! One week of nystan, salt water rinses, Gelclair rinses, Difflam lozenges, saliva pastilles and hell knows what else! 🙈

Just realised my later wig purchase is made in Myanmar 😢😢 not happy about that.

Still running like a tap and smelling again but now I’m just wondering if it is just the smell of an open wound? Thank god I found that laundry delivery service as it’s worth every penny.

i had the best sleep ever last night. Took a Zopiclone at 11 and woke up with a cat’s bum in my face at 7. The cleaner is coming today and that makes me happy. I’m not supposed to get showered with that wound but today I am I just never feel fresh.

Good Afternoon. I hope you don’t mind me dropping in but I think I will be joining your group tomorrow afternoon after an appointment with my GP this morning. I went to hospital with acute pancreatitis last Friday and an MRI showed a lesion on my liver thought to come from my bile duct or pancreas. I go tomorrow for the results of blood tests and a meeting of the hepatology specialists. I’m here to ask for advice on how I can help my DH, he constantly tells me that all he wants is to be with me and he has been clutching at so many straws this week. How can I make this easier for him?

Hi! Sorry to hear this. Im also sorry if I’ve misunderstood so please tell me to go away colourfully if I am wrong. This thread is for stage 4 patients who needed some space away from the other cancer thread. This is that cancer thread here. https://www.mumsnet.com/talk/general_health/5219604-cancer-support-thread-96-its-nearly-christmas-get-the-sprouts-on?utm_campaign=thread&utm_medium=app_share they might be more helpful with newly diagnosed cancer patients? I hope your GP was nice this morning though that can’t have been nice

@Okitsme - is it you that possibly has the cancer?

Thank you for the link. I shall go there.
It is me but I can cope - I think- I’m worried for my husband.
My GP was wonderful.

@Okitsme I think you also should join this thread - it’s very supportive and you will go through many feelings at this time

Your husband struggling shows how much he loves you and we all do cope differently

In the first place realise that you only know the barest information just now. But that will change and maybe it’s not so bad. Everything takes time, though

I can’t stay to chat as about to take part in a quiz night. I hope someone else comes along

I have stage 4 ovarian cancer - was told last April 12-18 months to live. But actually doing well just now.,

With love

Thank you so much.
I’m in overdrive mode having been fine this time last week, getting acute pancreatitis on Friday and a pretty worrying MRI scan on Sunday. Results tomorrow. Preparing for the worst - putting reinsurance details on the calendar for DH and setting up support for 87 year old DM etc- but hoping for the best .