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

[Tilllly]

New thread
All welcome, reluctantly

@GoldenDog1

I got told off for not filling in the date of my last period... I'm 57
And I had a mirena for 12 years

So date wise, about 2006... does that help? 🤣

🥳 😃 @ShalommJackie
Fantastic news

@Tilllly In my pre cancer life I was going for a scan for another issue The registrar was filling out the referral form asked my age,I was 42 at the time. He then said 'well I don't have to ask you if your breast feeding because you couldn't possibly be. When I told him that although I wasn't breastfeeding I had just had a baby he said ' REALLY ' obviously shocked that a geriatric 42 yr old was capable of reproduction!.

@RedRosesPinkLilies it is reassuring to have someone in the same position as myself Although I was worried about side effects of Niraparib I have found I have tolerated it well. My magnesium dropped for a while but came back up after supplements. Have you found you have lost your sense of smell? I've read lots of success stories of people on Niraparib so I hope it will work for a long time for you x

Great news @ShalommJackie

I'm still in hospital. They located the bleed in my kidneys. They thought it was sorting itself out but ny hb just dropped again. I'm having another bag of blood and a ct scan. They might get a rasiologist to try embolization to stop the bleed.

The consultant here said he didn’t want to scare me but what plans did I have and I was talking about the hospice. Lying here crying.

@Florsilvestredelcampo I agree that compassion and common sense should override box ticking.
I don't mind them asking but to then ask again and again is upsetting.

@RedRosesPinkLilies wow to ask your husband if he could be pregnant is taking box ticking too far imo.

@ShalommJackie that is wonderful positive news.
So happy for you.

@Tilllly honestly I wish they would just read the notes. I think a few minutes of reading notes could spare some feelings of people that are already having a tough time.

@WrenNatsworthy I'm so sorry you are going through all that. I hope they can stop the bleed and you get some positive news going forward xx

@Florsilvestredelcampo I don’t think I’ve lost my sense of smell, although I’m not sure it was great to begin with.
My bloods have been ok, but I do take magnesium (when I remember) because I was getting restless legs. Also take iron sometimes.
Sometimes I get incredibly tired - but that could be the menopause. Lots of reasons to choose from.

My oncologist said that in women who have the Braca gene - olaparib can be curable. No recurrence in 10 years.

Who knows?

They make strides forward all the time.
In the Sunday Times magazine on pg7 there’s a short bit about a thirteen year old Belgian boy being cured of a deadly child brain cancer. Diffuse intrinsic pontine glioma (sounds bad, whatever that means).

All of his cancer has disappeared on a drug called Everolimus - it was a drug trial.

Thar is just incredible. And even if we can’t be cured - hopefully we can be around for a lot longer than people were previously.

I am so sorry. That's so shit!!

Oh @WrenNatsworthy

Is someone with you?

I hope they stop the bleeding

Strides forward in research for ovarian cancer (or ovarian adjacent) have been massive lately and outcomes have improved. I'm hopeful that this will continue and we will be around for long time to come.
I'm BRCA negative and my cancer is a bit of a mystery . I was on immunosuppressants and a biologic for 7 years. My oncologist says it's not contacted but it's always been at the back of my mind that perhaps there is connection

@Florsilvestredelcampo I totally understand- hard not to blame these previous drugs. But what can we do? Have to keep looking forward.

@WrenNatsworthy I’m so sorry. That’s totally shit.
Perhaps they are looking for advice from palliative care - but not end of life care - and just want to know if you are known? I have met two people through Maggies who are on out patient hospice care - they were terminal, but still up and about.

Oh @WrenNatsworthy what a horrible shock, hang in there.

When I was hospitalised last summer the in-hospital palliative care team came to see me. They were actually great about sorting out pain relief, treating me like an actual human being and just making sure I was OK. I was a bit scared that the implication was that everyone thought I was on the way out imminently but I'm still here.

Hopefully, that's what will happen with you but I also don't want to minimise your situation or how you are feeling about it. Please keep us in the loop as much as you feel able.

@WrenNatsworthy Hug hug hug hug hug hug hug

Many 'prayers' not necessarily conventional ones for them to stop the bleeding, and to shut up and stop scaring you too.

@WrenNatsworthy im thinking of you so much and sending as much love and positive energy to you as I can muster!

@ShalommJackie great news!!

That's exactly what they did. The nurse found me sobbing and got the in house palliative care nurse to come and see me. She went to go and see the consultant to get some clarification on what he meant.

Basically it was a whole worse case scenario situation- if they can't stop the bleeding and I got transferred to the hospice in an ambulance and I have a heart attack would I want them to resuscitate me. To which the answer would be no.

However the other point was that it's not that they would stop the blood transfusions or other ways of keeping me comfortable.

It made me wonder why I would bother having this procedure anyway as I thought he didn't look overly convinced it would work.
And all this said stood up next to the curtain in my cubicle.
It was the weird ambiguity in what he said because I really didn't know what he was trying to say.

There's part of me that wants to fuck off the procedure, get them to put some bags of blood in me, go home and see the cats and then go to the hospice.

So I've got some control.

@WrenNatsworthy will this procedure hurt in anyway? What does it actually gain you?

There’s no point in flouncing off at this stage! If the procedure is worth it, then go for it. You actually do have control here.

The Consultant is human too. It must be hard to say these things to another human. Maybe he does know there’s a low chance of success, but feels he has to offer - because you never know - sometimes there’s a surprising outcome

I do know this is absolutely crap. And I don’t know how I’m going to be when I’m in the same place.

@WrenNatsworthy

I'm awake thinking of you 😘

I hope the bleeding has stopped and we're not at DNR stage yet

I completed mine when in hospital a couple of weeks ago

The hospice nurses call it the Respect form @Tillllyand I was going to be filling it on on Weds with one of them, but the in-house palliative care nurse here said we could do it together tomorrow.

@RedRosesPinkLilies No it won't hurt but apparently it's 7 days recovery and I'm not sure how long dying is likely to take afterwards if it doesn't work.

Yes, they called it the respect form with me too, and the palliative nurse did it with me

Covered where I wanted end of life care and where I wanted to die

Specific instructions - so with mine it says if I'm to go to hospital, it's not to be thru the ED (after the nightmares I've had there)

Also where you are on a scale from sustaining life at the expense of comfort, to maintaining comfort at the expense of life

It's a positive form in a lot of ways and doesn't take long to complete

The nurse from the hospice says everyone should have one. Where is yours stored @Tilllly ? Or do you keep it with you?

They gave me a copy but it's on both GP and hosp notes

And actually, not sure where it is 😂
I've not lost it, it'll be in my notebook or on computer desk, just not sure where.

It's important to let people know. So my friends, vicar etc know if my heart stops, they're to tell the paramedics I have this DNR in place. Otherwise they'll start CPR and take me into ED on that basis. It's harder to stop resus than to not initiate it in the first place

Ok thanks that's great.
I'm waking up hourly because of pain so it's nice to see a message from you every time @Tilllly .

The consultant took me off citalopram which I've been on for years because of bleeding risk. Last time I tried to come off anti- depressants I got brain zaps and my moods went haywire. If these are my final weeks I don't want people remembering me like that.

He told me 'it wouldn't affect my mental health that much'.
I'm going to speak to the palliative care nurse about that tomorrow / later as well.

Me too @WrenNatsworthy!

I found the palliative nurse really helpful, more so than the other medical staff

The oncology nurse had booked me in with the consultant too, so might be worth asking for an appt. He had some other ideas which are helping with the pain
But the nurse was the one that asked what I wanted.

I wish I could sleep like Daisy!

@WrenNatsworthy I know people who have tried coming off citalopram and they have all described the brain zaps and haywire moods.Yet it seems that the accepted wisdom is that coming off them won't cause a problem. It seems cruel to expect you to go cold turkey,the only person I know that has been successful in stopping them did do so very slowly and with something else in place to help her.
you are in my thoughts and your hand is being held by all of us xx

@WrenNatsworthy Have they managed to stem the bleeding overnight? I really do hope this embolisation procedure works in some way/shape/form. Doctors are sometimes quite strange with their wording and don’t necessarily realise that EVERY word/sentence/nuance on how it is said matters so much to us. One of the junior doctors last week, in the CAU, gave me my blood results as such: “Your bloods are a mixed bag, really. Everything is beautiful apart from the protein something-something which has indicated neutrophils level at 0.9” I just about shat myself with worry hearing the “mixed bag”, thinking, there we go, my liver is getting more & more fucked up! Mixed fucking bag!

DS came back from the camp with a raging cold and a hacking cough, of course. I think at least 50% came back with some sort of lurgy. I have been wearing a mask in the flat since he came back, can’t really kiss him/hug him properly as I am petrified of catching something that could scupper my 3rd dose of nab-Paclitaxel tomorrow. As it is, I do feel I have a mild cold and am welded to the digital thermometer.

@Tilllly Oh, to be Daisy. ❤️