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

[Tilllly]

New thread
All welcome, reluctantly

@WrenNatsworthy thanks lovely.
I've just been to have some eyebrows and eyelashes put on so I'm already feeling a tiny bit glamorous.
Seriously it feels lovely to have some eyelashes back even if they are only temporary.

It sounds like you had a lovely evening with your son and friends.

@TwigTheWonderKid ooooh keeping everything crossed you are well enough for the flower show tomorrow.
I've never been to a flower show but would love to.

@SewingBees I camped on my settee last night as I wanted to watch the results coming in.
I kept getting a bit emotional as the realisation hit that this is highly likely my last GE.

I don't, I was thinking 'Well at least I won't die under a Conservative government!'.

@GoldenDog1 I think every hospital discharge is a major faff for some reason, but you made it home which is what matters! Congratulations on your son, and I hope you have the best day on Saturday

I love how many of you powered through to see the results come in. I cant vote in this country, and I figured it was going to be a big swing to Labour anyway, so I threw in the towel early and went to bed. And then couldnt sleep so ended up checking the results every now and then anyway :)

Had scan today and that went better than expected. Chose to walk to the tube station after and its like I climbed Everest with how slow I had to go and how tired I was after. I really need to be working more with the under desk cycle during the week and start getting some fitness back. Was supposed to scan Wednesday but got caught again with a 'youve got a fever' and ended up in Critical Assessment after I got another damn IV antibiotic I didnt want or need. Honestly, it was 39.1 in one ear (38.7 in the other) and the anti-b Im currently on causes low grade fevers. I made a major fuss about feeling fine and wanting to go home and missing my scan - they said they could do it then at 5, but my leg was feeling so heavy I couldnt deal with that after such a frustrating day. This trust REALLY needs to review the whole fever protocol - look, I get sepsis is a risk but for gods sake you are making me antibiotic resistant at this rate!

I also tried to get some quotes today for travel insurance and that was a whole other ball of suck that isnt worth going into. We've all been there Im sure.

There was a point a few weeks ago when I thought I would be dead before this election but yes, very aware this is my last. Glad I voted for the party I believe in, rather than tactically. That was a bit of a gamble as our seat was a three-way split.

@HerbalRefreshmentt thank you.
I'm really looking forward to it now.
I'm sleeping in my reclining chair tonight so I don't knock my new lashes off 👁🤭😃

@GoldenDog1 hope you all have an amazing day and that your weather is better than ours!

@HerbalRefreshmentt I know what you mean and you've probably been on the BIBA insurance website but if not, it might be worth looking there as they I know there are some small insurance brokers on there who claim to cover terminal prognoses and offer a more personal service eg instead just ticking boxes they can request medical reports from your team to assess their risk and if they can cover you.

Here.

I used these guys when we went to Lanzarote, they were brilliant.

https://www.insurancewith.com/medical-conditions/

Good morning troops! How are we all doing?

I made it to the flower show with DS1 on Saturday. So nice to go somewhere other than Kingston Hospital! Really lucky Hampton Court is only a 15 minute train ride away and they had a free mobility bus at the other end so I just about had enough energy to get round most of the show.

Did have a bit of a meltdown when I got home but think that's because I didn't eat anything because I was worried about my unpredictable chemo bowels and dodgy unknown toilets...

Scrapping our car tomorrow. 😢 I haven't felt up to driving for a while and DH can't drive so it's been sitting for too long and is now utterly dead. We've had it 14 years don't doesn't owe us anything but we are all sad to see it go and it feels like another nail in our lack of freedom coffin.

Rather worried about our @LuciaPillson She's been in hospital and has gone rather quiet.

Yeah, I tried insurance with first as I have used them in the past and was happy with the cover and premium but maybe I just got a poor agent on the phone. He seemed to think he had to write a policy over something specific and was on thr whole very unhelpful. I spoke with my consultant today and she said see if they can just insure you against falls/fractures and illness and exclude thr pain management and lymph stuff. I'll give that a go tomorrow and will try insurance with first, hopefully with a better agent!

Scan results were..well they were worse compared to April but with my tumor markers and pain down we suspect the worsening happened in the month between that scan and start of treatment not to mention this was an early scan anyway. Agreed to do another cycle of treatment and scan soon as I get back from my holiday. So let's hope I get with the Abraxane program here!

Morning everyone.
I had a great time at my son's wedding.
I did unfortunately become a bit unwell in the early evening and thought I was going to have to go home.
I didn't want to let my son down though so instead I booked myself a room in the hotel, went and had a lie down for an hour with the air conditioning on full blast.
I felt much better after that and was able to return to the party and get back on the dance floor.
Bonus, I got to stay in a beautiful hotel room (even though I live literally 5 minutes away lol) and was able to have a lovely breakfast the next morning with my son and new daughter in law (I didn't gate crash they invited me 😀).

It was a great day and these happy moments are what keep me going.

Hope you are all doing ok.

That's so brilliant @GoldenDog1 . So glad you got to enjoy the wedding (and the hotel breakfast). Do you have any photos?

I'm in bed today. Day 9 of this cycle of chemo and again horrible pain. Exactly the same as this time last round, but on the opposite side of my abdomen?! Which is bizarre. It's like a cross between the most painful stitch ever and someone pulling bits of my insides apart with a sharp implement. It only happens when move so I'm in bed working on my laptop and restricting my drinks so I don't need to get up to go to the loo!

Really hoping it goes away by itself on Friday like it did last time.

Oh @TwigTheWonderKid it is hard gradually letting go of things. Glad you got to Hampton Court. I would like to go there.

Love to you @LuciaPillson ❤️

@HerbalRefreshmentt I just did mine online with them- have you tried that way?

@GoldenDog1 I'm so glad you enjoyed your son's wedding, I did see your pics on FB - lovely dress and lovely family pics.

I'm recovering from a horrendous sore throat and I can swallow without yelping. Hb was 96 yesterday so I should be leaping about but instead I'm lolloping about sleeping because the sciatica is bad. Oh well, always tomorrow!

@GoldenDog1 - so happy you enjoyed your son’s wedding- brilliant move to just stay over. He and his new wife would have been so sad if you left.

Sorry about the issues everyone is suffering

Im doing ok just now, as the anti oestrogen I’m on seems to be working. Although oncology are never that positive are they? Instead of a happy ‘yeah, congratulations- it’s working’, I get a downbeat -‘we’ll need to wait and see how it goes’

So maybe letrozole is working, but not well enough?? I don’t know.

Happily for me - the fact it’s working at all means I can go on a holiday with my DH and 4 (adult) kids. Last big family holiday - because they’re finding partners and it’s very expensive to do this. But it will be great to be together

Love to everyone. I read this thread a lot, just don’t post often. X

@TwigTheWonderKid I do have photos and if I can figure out how to add them here I will.
I'm sorry you are in pain and hope it eases off for you asap.

@WrenNatsworthy thank you.
I picked that dress purely for the fact it had pretty sleeves that were long enough to cover my PICC line.
It was also very comfortable and bonus I discovered half way through the ceremony it even had pockets 😀.
I hope you are feeling a little better today.

@RedRosesPinkLilies I'm so happy you will be able to get away for a nice holiday with your family.
When and where are you going?

It was back to chemo for me yesterday and I've mostly slept since.
I had plans for a few days away next week as it would have been my week off chemo but they've decided I will get chemo next week because I couldn't have it last week due to the chest infection.
I'm so confused as last time something similar happened they just scrapped the week I couldn't have it and carried on as normal.
It's not a problem really and I'll try get a few days away on my next week off, although I'm not entirely sure when that will be now.

Gosh I haven't caught up with this thread for a while and things move on.
I enjoyed the election as well it saw the end of Liam Fox's 32 yr s sitting in his very comfortable safe seat and he end of him taking tax payer funded trips to feather his own nest.
@HerbalRefreshmentt I'm sorry you had such a bad experience when our went for your infusion and I hope the mirtazapine is helping your sleep .
@TwigTheWonderKid I hope your pain is better controlled and does pass soon.
@GoldenDog1 I'm glad you managed to get to your sons wedding and have a good glam day. I've got a friends 60th birthday to go to next month and I've decided to go for a wig to try and glam up a bit.
@RedRosesPinkLilies I'm glad the oestrogen blocket is working for you, my oncologists favourite phrases when delivering good news is ' of course the caveat to that is.......'. I hope your holiday goes well.
Love to @LuciaPillson x
The trouble with me trying to a round up is that I worry I will miss someone out ,do people remember Bridget she used to do wonderfully kind and inclusive round ups. I'm just not organised enough for that but I do always send my love to all .
I had cycle 2 of chemo on Monday all ok so far Scan after cycle 3 to check progress. Cycle 3 is going to be delayed so I can go on our planned holiday. I'm just trying to dodge Covid at the moment my son finishes yr 6 in 2 weeks and there's a lot of event's coming up with I don't want to miss. I'm very excited to see his performance of squawk the parrot in 'Pirates of the Curry Bean'. He also has another gig this week end and is doing the opening bass line to Seven Nation Army so lot's of proud Mum moments I can't miss xx

@Florsilvestredelcampo thank you.
A wig sounds like a good idea.
I can't tolerate things on my head for too long otherwise I also would have opted for a wig.
If I'm completely honest I didn't feel that good about myself. I had my eyebrows and eyelashes done but even so I just wasn't feeling glamorous.
It's possibly because my daughter has just celebrated her 1 year wedding anniversary and looking back at those photos made me realise the effects cancer and chemo has had on me.
I was ill last year at my daughters wedding (I was still waiting to get a diagnoses) but I felt a million dollars with my thick long blonde hair that had been styled and I also had my make-up done.
In the grand scheme of things none of that matters and I was just grateful that I could be there, as last August I could only be at my other sons wedding by facetime as I had my first surgery the day before.
Im only human though and it did effect how I was feeling about myself.
I still had a lovely time though.

Pirates of the curry bean 😁. I love that.
Enjoy every proud mum moment and have a wonderful holiday.

Am still here <waves finger>
Thanks for all the love & good wishes

Oh it's raining, nice soft sounds against the 16th fl windows

We have rain too @LuciaPillson As I'm stuck in bed it's quite nice.

@TwigTheWonderKid Twig so sorry about this awful pain

When I get one side then the other it's been ovaries, don't know your meds but morphine helped me

@LuciaPillson oh that's interesting. I did wonder about that but it felt a bit too high but of course these blooming Krukenberg tumours are enormous so it absolutely could be.

@LuciaPillson it's nice to see you posting again 🙂

The rain here isn't gentle at all.
It's hammering down and I'm fed up with the shitty Summer weather now.

@GoldenDog1 I'm with you on the shit weather. As I was driving (carefully) through this afternoon's lashing storm I asked Google about the weather in Sydney. Middle of winter there but warmer and drier than here. I'm so glad I have a holiday to look forward to this year.

Seeing my oncologist on Monday. Still haven't had my quarterly CT scan, still haven't been told the results of my last one compared to the one before. Had a letter from him last week, dated early May, saying my last CT showed disease progression, which is a lot less nuanced than he told me in person.

I had an MRI last week so I don't know if he'll be using that instead of the CT, but is that comparing apples and pears? I've no idea and my request for someone to call me and explain what the fuck is going on. has been ignored. Again.

I am seriously pissed off and ready to give him both barrels on Monday.

Yayyyyyyy!