Stage IV cancer? Incurable? Roll up, roll up, this thread is for you!

@balkanscot sorry to see you need to join this thread. You helped me loads with my first cancer back in 2020 when I was snatched away from my HCP job. Sending love to you and your DS. I am another drop in who doesn’t belong on this thread but keep an eye on my buddies!

Oh no Mowly 😢. I’m so sad to read the update. I posted a fair bit when you started the thread but have had a lot going on outside of the cancer stuff (daughter with autism burn out & unable to attend school). I saw a few posts back you live in Whitstable. I was there only a few weekends ago. Thanks for your support & for starting this thread. There are no words really.

@LuciaPillson thank you, hugs in any way, shape or form are most welcome. Especially since going through all this utter shitshow is so lonely without DH by my side. I sometimes stroke my own hand if I wake up in the middle of the night, when heavy clouds of despair descend. Sad, I know. It is amazing how we crave human touch in those moments, yet I can’t ever have it again.

@TwigTheWonderKid today is the first day of my week-long break from Cape. So far it has messed me up at the very start of the 1st cycle - for the first few days I felt I was hit by a gigantic steamroller - no energy and horrendous nausea (wasn’t sick, luckily). But then again, I also had my umpteenth Covid/flu jab 3 days after, so goodness knows if that had anything to do with it. Some gastro issues (mainly gurgling in my tummy), waves of nausea (but manageable), and some nicks (kind of like paper cuts) on a few fingers on my hands. I have been slapping tons of Udderly Smooth both on hands & feet as a preventative measure. CT scan is on 28 December, oncologist appt. on 12 January. So will have to stew in my own anxiety for 2 weeks!

@SummerCycling thank you. 💐

@Silkiebunny oh, thank you, the lovely Floof, I remember him (her? - apologies, I have forgotten if it is a boy or a girl. How are you getting on?

@TopOfTheCliff I feel honoured that I was of some help, although I feel I was mostly ranting and raving and being pretty incoherent with the whole situation. It is a very weird feeling but I do feel ashamed to go back to the “standard” cancer thread, like I have failed everyone around me, including virtual people, by becoming a fucking breast cancer cliché and just another statistic, I.e., getting to stage IV and actually seeing clear outlines of death on the horizon as opposed to just the vague notion that we are all going to die at some point.
I remember your broken foot, your sailing/biking adventures and being diagnosed again with another primary - I hope you are slowly leaving the cesspit that is cancerland in the distance.

I feel ashamed to tell people in RL as well - only a handful know. Partly because of the shame I described above, partly because I get insanely upset when I have to retell “my story” over and over again. And partly because I can’t bear their (perfectly natural) reaction of shock, pity and concern. I wish I could have a print out that I can just hand out to people.

And another thing (rants and raves, as usual). I feel murderous when my MiL starts talking how anyone can be hit by a bus tomorrow. Well, I am already under the bloody bus, waiting for the wheels to finish me off.

Oh, and if MiL got hit by the proverbial bus tomorrow, she would be 79. I, on the other hand, will be lucky if I get to 55. Rant truly over for tonight, off to continue reading my trashy book - Gene Simmons’s autobiography - and I don’t even like him or KISS - much prefer Paul Stanley anyway, better looking than Gene (which is not that hard to achieve). 👹

Awe Balkanscot You are amazing, absolutely nobody would think you have failed, you have been through and continue to go through so much. I just wish I could take some of the pain away. If you ever need to chat fine to pm me anytime even middle of the night, I never sleep anyway or come on Tops thread, it's called the Great Recovery which obviously it's not but it's just a general life after cancer chat thread trying not to mention cancer too much or if it would help we could start another thread just for chatting about anything but cancer.

If writing it out and giving it to people helps then do that. I think a lot of people would find it easier and it would save repeating yourself 500 times. Floof is a boy but very vain so people on video calls think he's a girl but he's 8kgs and 1.2 metres so on meeting him people know he's a boy. I finished my cancer treatment Aug 22 apart from Tamoxifen and reconstruction so that is good it's over. Unfortunately a month after that my 15 year old asd DS was taken into hospital given a drug which went wrong and took 8 months to get him out of a coma like state called catatonia, he's back home now but absolutely terrified of anyone but us. He still can't speak or write but he can walk and eat. His sister who is a year older is doing really well perfect GCSEs, A levels and interesting jobs, boyfriend, travels a lot and applying to Oxford Uni. DH and I have also travelled to Maldives, Mauritius and Azores as well as France for relatives and go swimming three times a week, we have to work round DS but he can manage half days alone. I don't know if DS will ever get better but we will keep him with us indefinitely and hope one day he will come back to life.

I saw them this week! Have a wonderful time; you 100% will! QOTSA are awesome live! Have all the drinking and dancing you like and enjoy!

@balkanscot I found the first two rounds worse, then things settled a bit. Still have a very churny tummy and have to go to the loo a lot more but it's all manageable.

Re HFS, there's an Indian study which suggests rubbing Voltarol helps. I've been doing that and my hands and feet have so far been fine. I'll never know if it's the Voltarol but it's probably be worth trying.

@balkanscot I’ve done eight cycles of Capecitabine and struggled with the extreme fatigue more than other side effects. I hope it’s effective for you. I used Voltarol gel too and Udderly Smooth with urea 20% but still got blisters after rounds four and eight. It’s tough but at least you don’t lose your hair!
I am amazed you remember my dislocated ankle. I’m still trying to avoid the award for most disaster prone thread member!
Sending love xxx and peace

Raising a glass (plastic tumbler of water sadly rather than a goblet of wine aged in the castle vaults) to @mowly77, the First of her Name, epic founder of this thread! [sips]

@mowly77 don't know if you are still with us, and able to read on here, but sending you many many hugs and good energy.

Not myself a Christian but found this and I like it. For mowly and all our thread regulars:

And now may the road rise up to meet you,

May the wind be always at your back.

May the sun shine warm on your face

And the rain fall soft on your fields.

And until we’re all together again,

May the Lord keep us all in the palm of his hand.

There's also a short line from JRR Tolkien, just to mix up my fantasy references, which Gandalf says to the Eagles:

“May the wind under your wings bear you where the sun sails and the moon walks.”

Just a brief note on the thread: while this is a thread intended for Stage IV cancer-havers, I think any diagnosis of incurable cancer makes you welcome on here even if it's only Stage III, if you've been told that it is palliative rather than curative treatment you'll be getting. We are in a situation that is a little different from other cancer patients and it has been great to have specialised peer support in this thread, as our experiences and needs can be different. We don't want to scare people with lower stages and new diagnoses, but equally conversations geared towards cure and recovery don't really fit our reality. We enjoy a bit of dark humour and manage to have fun once in a while despite it all, 😁 but it's also ok to share rants, and honesty about how it's going. Or just to talk about stuff in your day that isn't specifically health related.

In my own news I've had some epic ABC (Arseholeish Brain on Chemo) this past week and Wednesday in particular was a day of constant mishaps on my part, I could not do anything right at all and was a grumpy git. I think the 2 vaccines I got may have played their part with fatigue etc over the weekend so I didn't get as rested as usual before chemo week, plus usual disrupted sleep etc. I can't even count the things I managed to screw up including making chemo wait for 40 mins as I didn't realise my pager was going off as it wasn't making a loud noise as they usually do (but was buzzing and lighting up which I failed to notice). So FECKINGLY embarrassing. Then yesterday just endlessly ranted at the pleasant young lady who is setting up my clinical trial about all of my hassles! Which she received calmly but I'm sure could have done without. 😅😫🥴😴 (That was an interpretive dance of my past few days in emojis). Also I tell everyone my neuropathy is gone yet my hands like to spontaneously flail about/jerk and throw stuff onto the floor.... what the feck is that about, I ask myself, but no I'm not gonna google it, just accept the poltergeist hands and get on with it....

Lucia I think its really good there's a separate thread now for stage 4 / incurable and its a good tribute to the lovely Mowly. We just all popped over as we loved her and were sad to see her final days (I last heard from her by PM very early on 13th and I have her details but sadly nothing since, hopefully she is just with family but given the updates I'm not sure) but we will all return to our other threads now and wish everyone the best. If anyone wants to pop over to our threads or to PM that's absolutely fine or set up a new one if people feel there's a category missing.

@Silkiebunny It's been lovely to see everyone on here for mowly! I do poke my nose into the main cancer thread on occasion. Hugs to you.

Thanks Lucia and hugs to you too.

Is the talk on a new thread meaning this one is going to cease?

Ive recently been diagnosed with stage IV lung cancer, despite never smoking in my life. I’m early 40s, it seems so cruel

@DaisyMaisyFaisy welcome and so sorry you find yourself here and for your diagnosis, that is indeed very cruel. I have stage 3c ovarian cancer so in the incurable category. The thread everyone is talking about is the one many of us on here joined first before @mowly77 started this one for stage 4/incurable - it's called 'Cancer support thread 91 - don’t borrow tomorrow’s worries'. It's a 'new thread' as it has been running for many years, having been initially started for just breast cancer. It is one of Mowly's wishes that this thread should continue so no, it's not going to cease, so no need to worry!

@DaisyMaisyFaisy as Fantasea says, this thread will definitely continue.

I know you said in your first post that you were understandably not ready to talk yet but we are all here for when you are. We all have different cancers but have a shared experience and this thread is very helpful and comforting in many ways.

@mowly77 so pleased so hear from you! You have no idea how much we have all been thinking about you. I hope you have been bathing in the massive outpouring of love from us all.

Really lovely to see you are still with us Mowly I just woke up to find your PMs thank you. Sending lots of love and glad you got to go home.

@mowly77 😘😘😘 Love is all that matters in the end, people we love and who love us back, absolutely nothing else. As corny as it sounds. I hope there are ways to make you as comfortable as you can be in this shithole of a situation. 💔

Hey! You turning into a giant catnip toy is not how I thought this was going to go but delighted to find you here and as usual sending many many hugs!

@mowly77 the Charlie Bucket visual made me smile. I hope Brenda gets on board with the situation and provides some of that good cat therapy. Please know there are people on the other side of the world holding you in our thoughts.

@mowly77 so lovely to hear from you and so pleased that you're home. Keeping you all in my thoughts and prayers, lots of love Xxx.

@mowly77 Has she showed you her butthole as well? That would indeed be typical Cat.

Have been stupidly wishing I could somehow come and walk on a beach with you wearing massive duvet coats and talking rubbish!

Sending love @mowly77 Thank you for all you have given us. Xx