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

[Tilllly]

New thread
All welcome, reluctantly

Oh Tilly that is just so utterly crap… Why do our bodies fight against us so much, and then we have to put so much effort into getting the care we need and deserve…. hugs (gentle ones!) to you and everyone who needs one. Thinking of you a lot and sending all the positive energy I can your way….

Doing sort of ok here, still struggling with the guilt a lot and me and hubby are both still v tired but a bit less snappy with each other so that’s something….. 😍

Our cat Charlie has been cheering me up though - we are lucky enough to have underfloor heating downstairs which has clicked on today as it’s been so cold. He’s been in ecstasy coming in from the garden freezing cold and rolling around on it 🐱 we are cruel cat parents and don’t let him upstairs - after years of him and his predecessor being up at night, scratching all around the bed, and nipping our feet under the duvet, we had to put a stop to it 😂

@Tilllly I’m so sorry things are going wrong. I hope they look after you and that the new drug works.

@Tilllly I am sorry to read your update.
Fingers crossed for some positive results from the new meds.
Sending positive thoughts and hugs your way xxx

Quoting because I have to answer on a different page and can't see what you wrote and memory is shit.

Sweetie

This is gutting and no was not the plan and I'm just sat here feeling so sad and outraged and weary for you. All the hugs.

That's so fucked up about the bones, as you say no wonder you were in pain.

Googled sotorasib and at least it's good timing that there's now a drug approved for the death star (which at least is a badass name). I'm hoping it gives you more good quality time. And that they can manage the pain with radiation, drugs and whatever so you can actually benefit.

We, your invisible family of fucked-up women are here for you and sending the best good vibes we can collectively muster. Which vibes will all come crashing through your bedroom wall at some ungodly hour (mine arriving late as ocean to cross) and hit you when you're least expecting it and you'll be like 'what the fuck was that?'

More gentle huggles for you and the Daisynator xoxoxoxox

@Tilllly oh wow that is a crap update. Im so sorry this is happening and you couldn't get a good break at least in one direction (especially the one that counts in terms of treatment working). Let's hope the new drug gives you some more beneficial time and they get you on a good pain regimen. Ive been on amitriptyline before and that will certainly help the nerve pain and help you sleep. Take care of yourself today and feel free to share the ups and downs.

@GoldenDog1 I know clinical trials are a lot of work, but they usually have their own nursing and trial staff to manage all of the work. Such a shame the nurse shut you down so quickly with such a definitive no. I wonder if she hears that question all the time from people at various points. Doing a trial (or more than one!) seems to be a much more accepted and streamlined process in the US while here you better hope your MO knows of something or is working on one themselves.

Hi everyone, just a quick check in from me.

I've had a lovely week free of medical appointments for the first time since November. Bliss. I have tried my best to not even think about illness but it hasn't been easy. At least I seem to have avoided whooping cough, which my husband has. I think I must still have immunity from being vaccinated 8 years ago when pregnant, and my daughter has escaped the worst too.

I have been dipping into the thread occasionally, and resisting the urge to do so more frequently as I find sometimes it can become a bit all consuming, though I wouldn't change it for the world. Having you all out there to chat to and share my woes makes a huge difference.

I wanted to go back to work this week but have been thwarted because HR wants me to have an occ health assessment and are dragging their heels getting it organised. Particularly annoying because I go down to half pay very soon so I need to get back asap. I've been keeping myself busy making a new bag, the excuse being the arrival of my blue badge. So I now have a bigger bag, capable of carrying everything I need (necessary when I need to use my sticks to get around), with a special pocket for my blue badge. I've also put in the journal I bought to write for my daughter. I haven't started it yet, I don't feel ready, but at least if I carry it around with me I'll be able to put pen to paper when the time is right.

Love and best wishes to you all x

Edited to delete text - posted twice for some reason.

@Tilllly I am so sorry things have taken a rather unexpected turn for the worse. This fucking disease is such a bastard - it can move from 0 to 60 in a blink of an eye. Just when you think you can plod along for a bit longer - boom! It serves you with a fresh hot plate of utter shit. Apologies for being so graphic but I really feel this way. I am hoping that the meds/radiotherapy are keeping you comfortable and not in too much pain. Rooting for the Death Star to do its may the force be with you magic (it reminds me of something out of Star Wars).

@SewingBees What a palaver you are having with your work and going back to it. As though you don’t have enough on your plate already.

@Iaspo I am so glad things are a bit calmer in your household. And the cat… I would be the same re: underfloor heating. That’s my dream, to have a house with it installed. May help me with neuropathic feet, too.

I cannot be arsed sewing name labels into DS’s clothes - he is due to go to the P7 (in Scotland P7 is the last year of primary school) camp on Monday for 5 days and EVERYTHING needs to be labelled. I have just run out of steam as this week has been besieged by nab Paclitaxel side effects, namely insane neuropathy. I finally got some at Voltarol gel to have for next time. Today is 95% back to normal. I am taking DS to Aberdeen for the weekend, we plan to go to Grey Hope Bay Visitor Centre to do a spot of dolphin 🐬 watching.

Mother in law is still dispensing her “one day at a time/try to relax/stay positive” drivel. Wow, how come I haven’t thought of that, amazing, never heard of it! Such a novel concept, must try it. I am surely going to throttle her next time, I can just feel my hand twitching towards her neck in her presence these days.

@balkanscot You need sticky name tags - saves heaps of time and will mean you can take your MIL's advice 😉😁

I wonder if I should ask for a second opinion, I trust my oncologist and I feel safe with him but it just seems a bit sudden. I think my confusion is that the chemo is shrinking the lung tumour, the fact that there is bone cancer is what he's saying is disease progression.
I'm not sure I understand why they can't carry on with a Chemo and give me radiotherapy on the bone cancer.

And should I be asking for a clinical trial?

@Tilllly I would definitely ask for a second opinion.

I didn't want to post this yesterday because of your awful news, but we saw the private surgeon my oncologist recommended and he was surprisingly helpful and offered us just a little bit of hope.

I think in our position at the very least we need to know that we have exhausted all possible options.

@Tilllly No harm in asking… you have nothing to lose, and you will know you have tried everything

I will do that then.
Because, stopping the Chemotherapy is end of the line, you can't go back on it.

Though I still don't know if that is a medical clinical decision or a finance and funding decision

@TwigTheWonderKid
You dingbat, positive news is allowed to be shared, even in the face of horrible news

Now tell us more. What is this glimmer of hope?

@Tilllly i hope and pray it is a medical decision. I do know the NHS is governed by money these days, but having spoken to my oncologist today - I think he would stand up for me if he thought it clinically in my favour.
Unfortunately, Cancer is king, as my surgeon said. And we cannot always survive it. That will come to most of us on this thread.
Quality of life matters.
It’s utterly crap, but we have to die of something
I would ask what else is possible
And if nothing is possible I would ask for the best palliative care possible
Everything we can teach each other on this thread helps
Lots of love xx

No-one to tell this to except this thread, really. Felt ok early in the day but now having symptoms from my metastases and struggling to cope, feeling a bit low. Just have to tweak my brain into a more peaceful state I guess.

@balkanscot Could MIL not be put to work doing all that nasty sewing?

Sorry to hear that @LuciaPillson 😢

I have got a glass of wine to cheer me up, I just thought fuck it, a glass of wine and a bag of crisps

Glad to see you are still able to insult you fellow suffers ,@Tilllly though I can't honesty recall when, or indeed of ever, I have been called a "dingbat". I love it!

So my "news"... Our appointment on Thursday with Professor Murphy (Private colorectal cancer surgeon) was not what we were expecting (which was that he would at least be able to explain why I was not suitable for surgery). But he thinks I could/should have the surgery that Basingstoke have twice turned me down for. And as we do not have private medical insurance, he will refer me to Imperial. If they won't do it we'll need to hunt down the back of the sofa (for that read re- mortgage the house) for £80,000 for him to do a private op or I said DH could save the money and push me under a bus instead... Early days yet and so much uncertainty so not so much news as a small glimmer of not exactly hope (surgery would not be curative but at least potentially time-buying).

Oh @Tilllly what a bag of shite, your poor rib. Yes, get a second opinion, I did and that Oncologist still keeps me on his radar re trials.

@TwigTheWonderKid this is cautiously good news 🤞

@LuciaPillson sending pain busting' vibes

Keep positive everyone, tomorrow's another day, chin up.

<runs from thread cackling>
<can only virtually run as haemoglobin has evidently gone down again since Tuesday's transfusion>

Oh, I've got scans booked for Friday, they suspect i might have a very slow bleed inside me somewhere. Tra la la

Oh Christ on a bike, my typos can be blamed on my useless, neuropathic fingers but I can't blame my total inability to proof read on that too.

@WrenNatsworthy so how does a slow bleed hunt go, will the scan be conclusive, or is it like a slow leak in a car where you just keep topping it up and hoping it doesn't break down?!

I haven't a clue, my dear Twig. I don't know how longer they'll keep topping me up with blood either. I've got a blood test on Monday (again which nobody told me was happening and we had to chase), and given the way that I feel today it will probably show low hb again, and I'll have another transfusion.

I has become a vampire.

@WrenNatsworthy I feel the urgent need to point out that you could be hit by a bus tomorrow.

<limps away from the thread cackling>

Actually laughed out loud at that Mrs Bees, well - played!

At least they don't top me up with poo when that leaks out of me so that's a plus.

[crawls away from thread faintly shrieking]

Every cloud @LuciaPillson.