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

Did you find your phone @LuciaPillson ?

Hey @WrenNatsworthy , keep checking in. I think we all need each right now.

NO 😨😭😰😠😁

@LuciaPillson but it must be in the house?

@Tilllly Or praps has slipped through a wardrobe and is now in earnest conversation with a lamppost....

That would be much cooler, than you having put it in a saucepan

Don't put a wash load on without check it thoroughly

@LuciaPillson have you looked in the fridge?

Is the ring on? Can someone call it for you?

@Tilllly Off to check the saucepans and I haven't got a washing machine....

@TwigTheWonderKid I did, though not very thoroughly. It's on silent. I gave up actually looking and am using the Marie Kondo method of tidying up and seeing what sparks rage joy rage (not really using Marie Kondo as would be disaster taking all things out of their place and piling it up somewhere, whole problem is flat is like this anyhow)
😒😑😶🥱😴

I meant more that if you'd put it in say your jeans pocket, don't sling them in the washing machine without checking

So check all the pockets, check the cupboard way you've got the coffee mugs and so on, and have a good look round the bathroom

@LuciaPillson Oh, how I sympathise! I currently don’t even own a phone case due to getting a new phone and then promptly ordering the wrong (but of course) case, so it had to go back. 🤪 But even so, whenever I put it down, I do so automatically and then a second later have no recollection of the location. Jesus wept! It’s on silent most of the time, too. I mean… 🤯 Then a thought enters my head (is this the sign of brain mets?!) and so it goes on.

I had a nightmare dream where all I can remember is waking up at 4 am drenched in sweat and unable to catch my breath - part of the dream was I was giving an anonymous patient liver biopsy with a massive needle (think Tina Turner the Acid Queen in Tommy’s rock opera) 💉and the patient was screaming the place down. The shit part of it is that, as a newbie widow, I couldn’t just turn to the other half of the bed and ask for a reassurance cuddle. I had to switch on Headspace and rummage for breathing exercises. 😭

Oh @balkanscot that's a horrible dream. It probably doesn't feel like it but it's a good sign you are having dreams like this as it shows you are processing things (and god knows you have plenty to process).

I have barely dreamed since I've been unwell, which I know is not healthy but also not something I can control. But interestingly before both my cancer diagnoses I used to have two recurring dreams. One was that we all lived in an amazing, big house and we would then find extra rooms that we didn't know existed. But they were haunted. The other one was DH and I bought a house without having a survey only to find it was built on top of a tube line, it it was clearly falling apart but we hadn't bothered to look properly before we bought it. I don't know how, but clearly a bit of my subconscious knew I had cancer each time, way before I had any proper symptoms and was trying to tell me. Shame the dreams weren't a bit more obvious...

Sorry that was a massive ramble.

How is everyone doing in this potentially tricky festive period?

Checking in @TwigTheWonderKid !

I got side swiped this morning by an unexpected call from the GP. I had what I thought was a sebaceous cyst drained 3 weeks ago and they sent some of the gunk off to be tested and it turned out to be Melanoma.

Apparently Ocular Melanoma causes subcutaneous lesions. Been referred to dermatologist. At least they can cut these out.

DS was off school feeling a bit run down today and he was here when I got the call. We just hugged and cried. DH came home from work early 🥰
I've had lots of hugs from DS.

I said this is a heavy burden for such young shoulders. I think DS is starting to properly understand.
He is so brilliant. I am so proud of him.

In happier news I'm going to sing with some of my choir tomorrow at an over 60's club. I am convinced singing is keeping the lung lesions from growing!

How is everyone doing?

Hi all!

Well I had a nice little break from chemo which I seem to have spent mostly napping (am writing this post in a partly-asleep state so apologies if incoherent). Back on again this week and then an extra week off again over the holidays which will be lovely. I learned today that the maximum dosages of drugs vary according to the weight of the person taking them so my max dose of paracetamol might be quite a bit lower than someone else's. Now avoiding it in case it's contributing to weird liver results.

However although I'm still underweight I've gained at least a stone since I was at my lowest weight which feels like quite an accomplishment. I was 6 stone or less and now 7 or even a bit more. Another milestone coming up: it's almost a year since my diagnosis and I didn't really expect that I'd still be here so that's good too. I never feel wholeheartedly like celebrating as the disease hasn't gone anywhere, but I'm grateful for the time I've had.

@Tilllly Well, phone was found eventually on a very small table just big enough to hold an electric fan and an errant phone. Your suggestions were all good!

@balkanscot The putting things down and them instantly vanishing is really getting on my nerves, it happens all the time. Just as if someone had yanked them out of my hands and spirited them away to another place.... I suspect the more prosaic explanation is half-asleep brain. Your nightmare sounds horrid, poor you!

@TwigTheWonderKid Apparently finding extra rooms is a common dream trope, though I'm not sure I've had those dreams myself... could be quite interesting but scary of course if rooms were haunted. And having them before your diagnoses is quite eerie!

@WrenNatsworthy Ohh that is just pants about the lesions, how scary and unpleasant for you, so sorry you have to go through this. Big hugs. Glad you're getting love and cuddles from family. Your son sounds amazing!

I do envy your ability to sing, my voice doesn't really co-operate but I do sing to myself when there's no-one around to complain.

Am glad it's turned up

I once rang my phone when I couldn't find it. I rang it... from my phone. I was so confused that it was engaged.

It was a rough day 🤣

Evening all. I am sorry I posted then immediately vanished, I was really hoping my scan was wrong and there was an innocuous explanation.

Biopsy results came back today showing my clavicle node is indeed cancerous.

Brief backstory, I was diagnosed with stage 3a low grade ovarian cancer (super rare) age 36 last May. Had a hysterectomy followed by chemo and was declared NED in December. Swiftly fell apart in August when I CT showed suspected pelvic recurrence, this was actually nothing but the PET showed activity in lymph nodes in my pelvis, chest and clavicle.

This essentially means incurable, stage 4. Which absolutely sucks balls. If I wasn’t so worn down I’d be furious. Currently no tumours etc just these lymph nodes so I feel absolutely well and healthy. I don’t know how to process these thoughts and emotions. I swing between positive and rage and utter desolation. I can’t begin to talk about it because if I let go I may never be able to stop crying and get up again.

@Tilllly that made me laugh! I could do the same!

@AGreatUsername - I know how you feel (I think). Stage 4 ovarian and really try to live in the moment, because the future is too scary.

Ive come to realise that although I look calm to others, it doesn’t take much to stress me, consequently I’ve realised that I can’t do everything I used to do before cancer, and I need to do what I value instead.

I also look and feel well. Chemo and surgery has dealt with the cancer just now - but it will come back (high grade oc). It’s hard to come to terms with the reality, when we don’t actually feel unwell.

I don’t really know what else to say.

@Tilllly That's hilarious. How long did it take you to realise? Very much the sort of thing I do many times a day would do.

@AGreatUsername Ohhh well I'm so sorry. It's always sad to welcome anyone to this thread but you are very welcome here and can share anything you like. This is a feck-blasted disease and it's awful to have a bad diagnosis overshadowing you when you feel well... and also awful not to feel well. I think most of us are having a mix of emotions to put it lightly!

Aside from the cancer threads here have you got any emotional supports and outlets? Counselling or social worker (sounds odd and this may not be offered in the UK but I've had what amounts to counselling from a social worker and it has been helpful, once in a GP's office and then in a cancer hospital), or any family or friends whom you can vent to? It can be hard if nobody quite understands, but just having someone to listen can be very good. The loneliness of bearing it all by yourself is just too much.

Might be worth taking note if there are any things that you can do in your day to day life that help and make you feel better. I do understand that likely what you really want is just a cure and not to have to try to "feel better" with this horrible diagnosis. But with stage IV quality of life becomes such a big thing and our emotional state is a massive part of that. Just being able to enjoy things despite everything. Haven't lost my ability to laugh thank goodness!

And if you do find yourself crying don't worry too much, you will be able to stop and sometimes it's a necessary mental and physical release. But try to have someone you can phone and cry at if it happens or someone who can be physically there with you. Oddly enough I tend to cry mostly about the frustrating little things which are just too much on top of the big things.

Ignore me if I'm talking bollocks which I usually am. Big hugs!

@LuciaPillson
When I hung up and was about to re-dial...

Many years ago, I came out of the supermarket to find my car had gone and rang the police to report it stolen. I then rang my husband to tell him, and he said "oh no, and it's brand new"
I've then had to ring the police back and tell them that I had forgotten I'd got a new car...

@Tilllly Did you need a stiff drink before that phone call?
Read about your snots on the other thread, you have my sympathies!

Hope everyone is doing ok or ok-adjacent. I'm currently being bombarded with Xmas pressies which is nice, though am going to spend Xmas alone but should be pleasant and restful, I have my little tree up and will play some nice music etc. Also, no chemo till (very) early in the new year though I do have an appt. between Xmas and New Year, just one though so after the worst of this cycle is over I should get a little break for rest and chores.

What has everybody asked for, for Christmas? Pampery things? Choc? Inflatable frogs? Weaponry? I must know. 😁🐸

No but I needed one after 😂

I've asked for a golden retriever puppy but I'm not holding my breath

How is everyone doing? I guess the runup to Christmas can mean busier times, hope you are all coping.

I actually had a night's sleep in bed from which I didn't wake up achy so a minor miracle there! I had been very overtired and really needed it. Lots of stuff to get on with, had zero energy to tackle it yesterday but onwards and upwards today (will make sure to rest though). Pleased about no chemo till new year and time for puttering. Saw a nurse for chemo disconnect yesterday and my regular nurse will come next week. Am unimaginatively giving them chocolate and biscuits for Xmas, I'm sure they get sick of that kind of thing but what does one give? I didn't do cards etc for hospital staff because I go to so many departments it would have been overwhelming to try. Bit of a cop out there.

@Tilllly Hope you get your puppy or maybe a baby reindeer would be nice, though of course they need a bit of outdoor space.

Good idea @LuciaPillson

If I insist I want a reindeer, a puppy will seem easy then

I'm going to have a go at making orange and cranberry muffins and taking them in

Might do a trial run on DHs office, see if they survive

@Tilllly So long as the muffins aren't covered in chemo-tainted bodily fluids some should survive? I'm full of Christmas cheer here as you see 😁

Good morning lovelies.

I've had such a good week energy-wise, though have been also feeling rather grumpy. It's been my week off chemo, DS1 is home from uni and it was my birthday on Wednesday so I had 20 of my lovely, lovely friends round for drinks on Friday night. Last night we went into central London to look at the Christmas lights and we went here for the Silent Night tour.

Chemo day today so firmly back to Cancerland plus mother in law arrives for a week on Thursday. Oh well...

I took in a "hamper" to my chemo unit. I chatted to one of the nurses and she said they always welcome tea, coffee, hot chocolate etc so I bought some of those and some biscuits, plus tea spoons as I know from working in a different hospital that they always go missing!

How is everyone doing?