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

[Tilllly]

New thread
All welcome, reluctantly

I feel like there must be some good comeback. Maybe responding each time, 'No, I hope you are well'.

Or repeating the sentiment then beginning to vary it slightly in odd ways. 'I hope you are well,' 'I hope you are swell,' 'I hope you are Weltschmerz,' 'I hope you are schnell,' 'I hope you are Wellington,' 'I hope you are well, with bells on,' and so on till he begins to feel a creeping feeling of unease and as if someone, somewhere, is plotting to throw a computer at his head. Maybe don't use 'I hope you are well-endowed' as that will either get you that little talk with HR, or a dick pic, or both.

Or respond misquoting Dumbledore, 'Hope is a flighty temptress,' or some such.

I think people get confused by our situation. They understand: get cancer have treatment, be cured and also - get cancer and be dead but I think most people can't get their heads around our situation, hence all the "you look well" comments too.

Not sure about the work/email situation but when I see someone in the street I know and I can't avoid talking to them, I've taken to saying "still dying" when they ask me how I am. I am done with sparing other people's feelings at the expense of mine.

@TwigTheWonderKid

😂😂😂

I'm so using that!

@WrenNatsworthy Are pinkiness levels rising? When do they plan to release you back home?

@HerbalRefreshmentt My lack of sleep (at the moment) is mental. I think fecking scanxiety has already begun, 3 weeks before the actual date.

@Jouleigh So sorry you had to come here (in a nicest possible way). Let us know what today’s meeting brings. I hope they have a plan sorted out as well, at least it makes one feel like you have regained some sort of control in an otherwise uncontrollable situation.

@SewingBees What pointless drivel this “ I hope you are well” is! I also hate it when I get phone calls that usually start with “How are you?” Oh, you know, just busy cultivating mets in my liver.

@TwigTheWonderKid I may test this on my MIL. 👹

DS is coming back from his camp this lunchtime. I told him we can order Deliveroo tonight as a treat. I thought I would do this and that while he was away but have been scuppered by the shingles vaccine and an iimpromptu jaunt to the CAU. have really missed him. And again, thoughts of breaking his little heart when the time comes have been consuming me. Will he ever be able to forgive me for causing so much hurt & pain? Will he ever trust people again not to “abandon” him like both his parents did? It’s his 12th birthday in late April. How many more of his birthdays will I be around for?

Off to find some sort of distraction now.

Oh @balkanscot he won't ever think that. He knows how much he is loved by you and he will always know that.

Hello, honoury MND member here. I read all of your posts and I am thinking of you who have had bad news. I think a second opinion always helps and is reassuring.

I thought I would mention my new bed. I have been loaned (through the hospice and district nurse) a hospital bed. I had to wake my husband 4 times a night to move me and the bed has been a game changer. I have a control and can sit upright or any angle from there to flat. Legs also move. Would it help those who have trouble getting comfortable to sleep?

my husband said let’s borrow it and we can return it if it’s not helpful. Social services brought it in pieces and assembled it in the bedroom.

@TwigTheWonderKid Thank you, I hope he does.
Shingles vaccinations can either be live or non live. I got the non live version.

Greetings from hospital and rest assured I've read all your messages but still on Oramorph for this horrendous pain they think might be appendicitis. Ha ha. What larks. I am staring glassily into the distance like I'm in Trainspotting.

AIBU. Woman in next cubicle listening to her audiobook without headphones. Rude right? She has Chrohns, doesn't look like there's anything wrong with her ears.

I had a third bag of blood this morning. Since then I've been left alone. I'm going to be having a blood test to see what the hb levels are, and a ct scan at some point today.

In the same hospital I'm already in! We got 2 trusts communicating with each other!

This is a miracle.

@TwigTheWonderKid I haven’t quite said that - very very tempted sometimes- but I do always put scan results in the context that the cancer will come back. I’m happy with a good result- but that won’t last. People I see online die within two years sometimes, it’s not a cancer that they can do a lot about. Some get longer - but you just don’t know.

No way am I going to endure people being happy that I’m ‘cured’, when I have to live with this constant negative future.

I do make the most of my life just now, and I’m not mean to people, but I can’t be arsed telling them everything is wonderful when it’s not.

I’m really not this miserable in real life!

Hi everyone,
I had individual replies typed out for you all but my post wouldn't post so not sure what happened there.

I had chemo yesterday and it has knocked me for six this time round and I've been feeling quite poorly since yesterday.
I've just been up to have my CT scan and hooray they got the cannula in first time.
Unfortunately during the scan I felt really bad pain in my arm and it had "tissued" so I've now got an arm that's swollen like a balloon, an ice pack and instructions on what to look out for if it gets any worse and to go to A&E if it does.
Sigh! nothing is ever simple is it?

@TwigTheWonderKid I think I'm going to use the "still dying" comment every time someone asks how I am.

@WrenNatsworthy yes it is rude of that woman. Tell her to get her bloody head phones on.
Hope you get home soon and that you are suitably Pink.

@balkanscot I'm sure your son knows how much he is loved.
I can't imagine how you are feeling with everything that you have been through but sending you virtual hugs x.

@Jouleigh I'm sorry you find yourself here. I've only just found this little corner too and have found everyone to be lovely & supportive and they make me laugh too.

I need to go back to sleep now but sending positive vibes to you all x

I came back with a tan from our last beach holiday 2 years ago and both MO and nurse said 'oh you look so healthy!' Gee thanks.

Barely made it through my PET CT yesterday, they had to bolster me with a ton of pillows and blankets to alleviate the pain enough that I could last 20 minutes. I felt like a turkey being shoved in the oven. The nurses were wonderful in dealing with my crying while we figured something out that would get it done. Monday we will see, but my money is on at least one nerve compression (femoral). Ive gone to crutches for the weekend to rest the hip and actually maybe Ill go for a short walk with them, they let me get more range of motion like a normal step than the cane.

Was thrilled to see Kate Garraway showing off her fancy M&S padded knickers on tv/daily mail because I damn well need a pair as a medical necessity after losing so much on that last drug and here is a pair ready made for 15 quid. Thank god a fake ass is in fashion! And no, I never thought I would ever type that range of sentences in one paragraph.

I did order a heated throw (finally) this morning because itll be cheaper than running the heat when Im feeling cold and give full leg coverage. The cat is gonna be ecstatic.!

@WrenNatsworthy Why do people do that, seriously? Would it kill folks to grab some headphones? I guess its better than a non-stop phone call with relatives or, as I had to endure last summer, a very posh woman calling round to tell her friends she was about to pop her clogs and thanking them for years of beautiful friendship.

@NewNormalNotGood I do love a hospital bed, but Im not sure we have the space to put it anywhere. Tonight husband and I are going to try a new strategy and figure the maths and physics behind getting me to sleep on my left side so that it doesn't cause muscle pulling on the right, just to give that right side sacrum a break. If I could do that I think I could last longer than the current 15 minutes.

Actually, Im thinking of starting to write down all the weird things my brain cross patches when I drift off for a few minutes, like some sort of David Lynch art piece lol.

Hi all and hugs to those who need them. For the newbies, I’m grade 4 aggressive brain tumours, glioblastoma. Several of them so no chance of surgical removal. Diagnosed about 4 weeks ago so still v raw.

Having whole brain radiotherapy to try and extend initial prognosis of 3 months. Also trying to get involved with trials. I’m married with 2 girls aged 5 and 11. Aim is to hang around for as long as poss for them, as long as I’m “me.”

Im keeping my hand in at work, supported by lovely colleagues.

re the work emails, I deal with an agent who knows my situation and keeps starting emails with “don’t worry about this if you’re poorly…” Err no “poorly is a bit of an understatement mate!!! I try and let it all wash over me….. I think he means well…..

👋 and 🥰

I've not posted on this thread before but I have been a regular on the other cancer thread. I was diagnosed with stage 4 fallopian tube cancer in 2020 chemo,surgery,maintenance, reoccurance followed. I was started on Niraparib last year but my ca125 has been creeping up. So I had a scan yesterday to decide next steps and a appointment with my oncologist on Thursday.
I'm pretty sure that they will stop the Niraparib and suggest more treatment or 'wait and see'. I think I could cope with treatment better than the wait and see option, but cancer holds all the cards and doesn't consult me on what I want.
I went for my scan yesterday I was expecting the picc team to cannulate me and said so to the radiographer. "oh you don't need them I can do it" "Are you sure I've got pretty tricky small veins" then he gave me the smug look that says well you haven't met me with my superior skills. Yes, I have met you and I know you will be SHIT like 85% of your colleagues that can't place a cannula without causing pain. Is what I should of said, ok is what came out of my mouth. Anyway he bodged his first attempt " Oh" he said "you got really small veins"🙄.
Anyway second one went in and the scan was done.On my way out the picc team arrived at the scheduled appointment time, he had obviously decided to go ahead without them because I was early!( note to self don't turn up early)
To add insult to injury I got the usual question"any chance you may be pregnant" he then asked me how old I was,when I told him 53
He said in 2 yrs we won't have to ask you. "I don't have a womb so pregnancy would be miraculous". I did say that what I should have added was to glance at my notes in his free time🙄🙄🙄

Evening all. I've been lurking and reading but haven't got the brain capacity to formulate a coherent reply to anyone.

In lieu of that, I am posting a pictures of Smudge.

He looks so poised and elegant, can cats know they're beautiful and pose accordingly? I'm sure he has some kind of catly title like His Serene Gorgeousness Lord Cattins of the Bedchamber, Smiter of Rodents, Maestro of Milk, Knight Grand Floof of the Most Excellent Order of the Feline Empire.

@TwigTheWonderKid what a gentlecat! I forgot about Sir Smudge, such an adorable little face. He looks like he has expectations and you aren't meeting them at that moment because you are too busy taking a photo.

@Florsilvestredelcampo ah the pregnant question. I got that this week hot on the heels of the 'what surgeries have you had' where I listed out oophrectomy last. Then they asked why I didn't think I could be pregnant and I pointdd out well, because I have no ovaries lol. I get its forms they have to complete, but cmon people, engage the brain a bit.

@Iaspo welcome to the thread, that is quite the shit diagnosis! Do feel free to share and ask questions, though, doesn't matter who has what we, all have the same fears and desire to share the ups and downs with each other. Is there a reason you are still working, maybe to keep some normality or?

@Florsilvestredelcampo sounds like you have similar problems to me when it comes to veins & cannulas & it's so painful.

After my cannula "tissued" on Friday thankfully my arm hasn't got any worse.
Some of the swelling has gone down now and I'm just left with a big hard lump under my skin and a nasty bruise.

I was asked on numerous occasions on Friday if there was any possibility I could be pregnant.
I understand they have to ask but after I told them I had a hysterectomy 3 years ago I'm not sure why they asked again 2 more times.
What annoyed me most on Friday was being asked if I was a he or a she then asked again if I was born male or female immediately after saying I had had a hysterectomy.
I'm probably being a bit over sensitive about it but I felt a bit upset about that.
I know I don't have much hair from the chemo but I don't look like a man (I don't think I do anyway).
Probably all standard questions but it still upset me & I don't recall being asked that before any of my other scans.

@TwigTheWonderKid wow Smudge is a beautiful looking cat 😍

At some point compassion and good old common sense should over ride the need for form filling.
A large % of the work they do must be with women that are going through or have had cancer treatment and don't have reproductive organs it makes me angry that we can't be treated with some respect. I was going to leave it but I think I need to address the issue, practice needs to change.

@GoldenDog1 I'm angry that you would be asked if you were male or female after you told them that you had a hysterectomy.Read the notes and listen to the patient surely should be a basic in good practice.
I 've always had trouble with any kind of cannulation/blood test but when you say that to a lot of HCPs they look at you look your a neurotic baby. I have met some 'needle ninjas' . My favourite was a nurse whose background was neonates and was therefore was very practiced at working with veins the size of hairs. she used say there's no such thing as bad veins just people with poor skills. A lot of HCPs are over confident and oblivious to the pain they are causing the person at the sharp end of the needle.

@TwigTheWonderKid that is a very regal cat and I hope the week can bring you more clarity.

I'm going to try to forget Thursday's looming appt and focus on my boys 11th birthday which he's very excited for and I'm completely unprepared for ! X

@Florsilvestredelcampo
I’m not sure if I remember you from a previous thread - the original one.
I actually do have the same cancer as you - Stage 4 Fallopian Tube. I just say ovarian because people have heard of that, and I want to minimise questions. Originally they thought it was Primary Peritoneal Cancer - you may remember that.

If it’s you - you did send me a comforting message on the thread - sometime last year when I was first diagnosed. Thank you.

If it’s not you - then someone else has Stage 4 Fallopian Tube Ca. It’s becoming more common!

My DH was asked if he could be pregnant before an op (Scotland).

They said - because of gender fluidity these days - they have to ask everyone. It’ll be a stupid rule and not their choice (I hope!)

Hi guys, I wanted to pop on and do a small update on me. I had tumours in my liver and abdomen. Stage 4 melanoma on targeted therapy. Every single tumour except 1 has gone and that one had shrunk by half.

I can't believe it. My oncologist said I had had a brilliant reaction to the treatment and he expected the one I've got left to be gone at my next scan. I can stay on the targeted therapy 'until it stops working' so there's that! He's got a couple of patients who have been on it for 10 + years.

Fuck it I'll take that

@RedRosesPinkLilies it was me I have named changed, I'm glad I was of help to you. I also just say ovarian to people my oncologist said that a lot of ovarian cancer have actually originated in the fallopian tubes x

@Florsilvestredelcampo I thought the name was changed slightly- but couldn’t remember. Kinda lovely to ‘know’ someone in same situation- isn’t that bizarre?
I’m also on nipararib - hoping it works for ages. X

@ShalommJackie - delighted for you!! Wonderful news! X