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

[Tilllly]

New thread
All welcome, reluctantly

I’m a doctor. I don’t have cancer. I am not an oncologist but if you come in via A&E with a chest infection you’ll likely see me as your friendly medical registrar on call if you’re admitted under medicine. I was wondering what could you change about how non oncologists look after you? Anything you think could be done differently?

Stage 4 cancer patients are living with cancer for a long time now and I really hope you can benefit from any new treatments coming out. Seeing patients get poorly in middle age really makes me want to go and grab life, it’s so short and it sounds like everyone on here is really making the most of things despite really tough circumstances. I have so much respect for you all.

If I see a stage 4 cancer patient in A&E I do everything I can to get them a trolley or cubicle no matter how busy it is and not leave them in the waiting room or on a chair! Often having a bit of a bargaining war with the nurse in charge to try and get a cubicle. Anything else that helps or things we shouldn’t do?

Thanks @Tilllly I'll have a look into it x

Hey everyone, it's been lovely, yet awful, if you see what I mean, to read all your stories. Missing Mowly loads.

@Tilllly So sorry you are in pain, I wish you weren't and send hugs. I do have a request, if you are ever feeling up to it could we perhaps have a Daisy pic to baptise the new thread?

@HerbalRefreshmentt I might need a diagram for the pillow thing!

As for me, I'm older than most of you at (perhaps) soon to be 64.

Went to emergency with abdo pain Dec 2022 and it turned out to be a tumour blocking the colon, then was told of abdominal mets so was straight in at Stage IV. Came out of hospital with an ileostomy and started chemo in Feb 2023.

Had a good year of stability, no shrinkage but no growth, for which I have been grateful. Lately however there were interruptions to the treatment for this or that reason and the cancer took the opportunity to spread quickly to ovaries and pelvis.

Now I seem to be having symptoms from the cancer for the first time, rather than just from the treatment. Am on chemo and immunotherapy again but it feels like possibly too little, too late. Am not giving up but feeling scared and discouraged and every little twinge is DEATH in white wellies.

I did have a fun exchange with the guy who did my latest CT, he was very jokey and nice so I ordered him not to find anything as the last scan had found new tumours. He joked that he could always use 'the eraser'. I said 'Why didn't I know about the eraser, everything could have been different!' Then at the end I reminded him about the eraser and he said maybe he should charge for it, I said he could have a nice little business going. Anyway it cheered me up no end imagining a magic cancer eraser that would work on the patient as well as the scan... such a simple solution compared to all this treatment and surgery nonsense! 🤣

@GoldenDog1 I requested change of oncologist through my GP, but I had been given a recommendation of two local specialists from the breast cancer specialist at my local Maggie's. I imagine it will be much harder for a rarer type of cancer. Might be worth asking them though, or local MacMillan staff.

Just in case @Tilllly is too annoyed to post puppy pics, here's one of my two good dogs waiting for their dinner

What adorable gangly floofs @SewingBees

Do they have any way of knowing how cute their faces are? I suppose not!

@LuciaPillson I love that story of the cancer eraser 😀 If only eh?
@SewingBees your dogs are adorable.
I would put a picture of my two on but my brain is too fuddled right now to work out how to do it. Maybe another day.

I will speak to my GP about getting referred for a second opinion.
I know I will have to travel as we are so limited round here but I'm ok with that.

Hi all. Strange to have a new, Mowly free thread. I miss her witty, acerbic comments.

I’m 38, married with 5 children between 7-21. Diagnosed with stage 3 low grade ovarian in 2022. Had my surgery and 6 rounds of chemo to give it my best shot, even though low grade is notoriously chemo resistant.

Less than 9 months later recurrence was confirmed in lymph nodes in my pelvis, chest and clavicle. I haven’t been restated officially but it is distant spread and inoperable so I am done for at some point, I am just hoping to stave it off for a very long time!

Nope they've no idea that they're gorgeous. The little one regularly barks at her reflection in the oven door though.

They're both well overdue a haircut, booked in for 3 weeks time. We had snow yesterday and they appreciate having longer coats when it's cold. The vacuum cleaner doesn't though.

I'm in theED
Pain horrific in waves

Want to be in my own bed with Daisy dog snuggled up

Best pics I have at the moment

Hello @Tilllly I'm here, can't sleep. Love love love xxxx

@Tilllly Oh honey

I wish so much I could help you, failing that I hope they can help you and give you something good, it's not right for you to suffer like this. Biggest gentle virtual hugs my dear.

@Tilllly I desperately hope they can help you at the hospital.

@Medstudent12
Thats very kind of you to post
Only experience I have of being in A&E with cancer related issues is when I had a UTI related to low wcc from chemo -and I went swimming (no one told me not to)

So my temp was consistently low at home, and I was shivery etc. NHS 24 sent me to A&E rather than the Oncology ward.

The problem was I look well even though I’m ovarian stage 4. It’s spread, but the cancer load hasnt overwhelmed me yet

The first nurse to take my temp found it to be normal. She looked at me like I was making it up! Genuinely.
I never knew you could not get taken seriously as a cancer patient.
And I was a Dr many years ago.

So the usual long period of waiting. Which cannot be helped and I was in a bed.

I was very fortunate in the Dr I saw. He was flummoxed as well because I did look well, my wcc had risen in response to the infection- but they had been around 2/2.4 pre chemo (which I think had been that week).

He debated with himself a while. But he did give me IV antibiotics- unusual ones (I can’t remember the names - I’m sure you’ll know). And I genuinely think that made all the difference to the infection.

It sounds like you take patient care @seriously- so it’s for me it’s recognising that even if we look well, we are not actually well inside.

Thsnk you for asking

@Tilllly So sorry to hear you are in hospital and in pain.
I hope they can get on top of your pain and you get home as soon as possible xxx

Daisy is beautiful 😍

@Medstudent12
Thank you for your post.
I unfortunately haven't had too many good A&E experiences while having cancer.
I'm usually told to just go and sit in the waiting room with everyone else which is always a worry because of the infection risk.
The last time I was there I did have a sympathetic triage nurse who got me a wheeled chair to sit on by the entrance doors away from everyone else. It was bloody freezing though 😂.
I don't know what else can be done really though if all the cubicles are full.

I've also been told I shouldn't be there because of the infection risk by a triage nurse and an A&E doctor despite me telling them that I had phoned the emergency Oncology line first and they were the ones that told me to go to A&E 🤷

@Medstudent12 Thank you for seeking our views. I would reiterate what @RedRosesPinkLilies said. Looking at me you would not for a moment think I have stage 4 cancer, so medical staff need to be prepared for the fact that a seriously ill person may not look unwell.

I have only two A and E experiences since I was diagnosed. The first time was in the middle of the pandemic when I was in the middle of chemo (and did look very ill and had no hair) and I had to sit in a crowded waiting room for several hours with COVID patients coughing away. Even though I was presenting with visible signs of infection and was sent there by a walk in centre, and even though I showed my cancer treatment book with it's massive warning label about putting chemo patients with a temperature immediately on IV antibiotics, the medical staff insisted on taking a blood test to check for infection markers before putting me on antibiotics. Hence the long wait surrounded by COVID patients. It was very frightening and I was made to feel like I was being a bit of a nuisance.

The second time was when my back collapsed last year. It was presenting like a slipped disk but the junior doctor who saw me identified that it could be cancer mets and pushed for me to get an MRI. Thanks to him the secondary cancer was found straight away and he told me in as gentle and sensitive a way as he could, and pushed for me to be admitted for a CT so I would quickly know if the cancer had spread any further. There were no beds or trolleys in A and E, but he found me a side room and I spent an uncomfortable night on an examination table, but as I couldn't sit or stand it was better than any other option. I'll never forget that doctor - he advocated for me when I really needed it.

Still thinking of you our @Tilllly xx

I'm still in the ED, waiting for a bed

Still in pain, but it's not as terrible. Couldn't do the CT because I can't position, can't lay down

Oh darling @Tilllly we are thinking of you, lets get you out pain.

@Tilllly Yes we are thinking about you and hoping it keeps getting better. Fingers and toes crossed they sort you out soon and you get out of pain and re-Daisyfied asap

Am on a side room and nurse is bringing morphine every 2 hours

Still in pain, still don't know why
But at least it's bearable and I can stand up, go to the loo

I presume they'll try again for CT today, tho I wish they'd just knock me out and do it.

Hey @Tilllly , good to hear from you. Are they giving you morphine orally or a drip?

Have you got family etc with you?

Sorry guessing you don't want to answer a lot of questions. Have been thinking about you all day hoping you were ok.

https://www.facebook.com/nurtureyourpet/videos/golden-retriever-hugging-his-partner-/494412519155700/?locale=ms_MY

Seconding those thanking you @Medstudent12 for asking. SewingBees is right - a lot of these drugs mean we dont LOOK unwell, but they tank our neutrophils just like IV chemo and we can be in a precarious state. My last visit to A&E the ladies at the check in desk tried their hardest to make sure I had space away from others, but that meant a hard chair stuffed in a very awkward corner by the front desk so I heard everything everyone presented with coming in. Another cancer patient came in, and he WAS on IV chemo and had quite the face mask precautions, etc, and he was placed in a small exam space other side of me. However, NEITHER of us was ever seen after 5 hours of waiting, and when they announced another 7 hours at least, both of us self-discharged. Now, had I been able to see someone the growing pneumonitis in my lungs may have been picked up two weeks earlier but hey, I looked fine with just a little cough, so obviously I was ok right? My point - don't just assume with cancer patients. These drugs are so hard on us and we very well could have issues.

@Tilllly Nothing worse than uncontrolled pain AND having to sit somewhere uncomfortable. At least they are bringing you pain killers on the dot and havent forgotten you even with the nurse changeovers. I hope they find that source soon - best of luck getting into that CT scan and then whatever the outcome may be!

@SewingBees your dogs are adorable! I love wire haired terriers and that sort of look, but we are cat people so I will admire from afar. Such expressive faces!

Currently hydrating in advance of cancer day at the H. My list of questions for the oncologist is loooonnnggg but tough crap, we are going to take our time and go through every damn one of them. Night four of no sleep, I cannot get comfortable in one spot for longer than five or ten minutes before the pain starts up. Its driving me insane, sitting up I doze off reading something or whatever so that + the five or ten minutes I can get per hour is about it. On the plus side my new adorable rice cooker is arriving today and Im riding to the H in Uber with some style. Maybe Ill get lunch out, blue skies today down here in London so far.

Hi everyone.
I'm feeling anxious and pissed off today.
Went for my bloods and line clean ready for chemo tomorrow only to be told I'm not down for chemo this week.

Wait what? Of course I am.
Nurse emailed my Oncologist to ask and he replied and said no I can't have it because this would have been my natural week off.
Erm no that would have been last week although I did have chemo last week because I wasn't given it the week before due to having to have some teeth extracted.
My Oncologist literally told me all he was doing was swapping my week off but now it seems that isn't the case.
This means I'll have less chemo before my scan in just under two weeks.
The nurse tried to reassure me that it won't make any difference to my scan results but I'm not reassured.
There must be a reason why my chemo schedule is 3 weeks on 1 week off so this stopping and starting it is making me really anxious.
Also it was already agreed I would be having an extra week off later this month as I had already booked a few days away before my weeks were swapped and my Oncologist told me it was important to still go.

I think I'm panicking a bit because of the scan coming up and having already been told if this isn't working they only have one more chemo they can try.
I'm so tired of worrying and not knowing what the hell is going on.
I do actually have an appointment tomorrow with my Oncologist so I hope he can give me a damn good reason why I'm not having chemo this week after our last conversation didn't indicate this to be the case at all.
Sorry rant over.

@Tilllly I really hope you are feeling better today. Sending positive vibes your way xx