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

So glad the chemo went well for you today @balkanscot, that must be such a massive relief.

So is your boy in the last year of primary school? How did the meeting go? He's been through and is going through so much, are they supportive?

Washed out with hot chemo sounds like some bizarre sex act

🤣

I'm not a doctor and my biology degree is woefully inadequate... but I still don't understand why they wouldn't at least try

@TwigTheWonderKid Thanks for clearing up re: your treatment. It is still crap, though.

School meeting went OK. If anything they are over anxious themselves and are petrified of doing the wrong thing. They keep asking him if he really wants to go to the P7 (equivalent to Year 6 in England, last year of primary school) camp in March all the time, so apparently he has been saying to school staff he is now not sure if he wants to go! Totally opposite to what he says at home which is he can wait! Overall it was good but, of course, tinged with emotion as there was a lot of talk of “If you feel too ill…”

The biggest challenge at the moment is him reacting calmly to an unexpected problem. For example, at the weekend we took a wrong turn and got to the wrong car park. All we had to do is turn the car around and try again. But he went all flustered and agitated and kept saying that if dad was here he wouldn’t have done that and that he wished dad would help up us not take the wrong turn. Peppered with mild swearing. Dealing with child’s grief AND deal with my own diagnosis, dealing with this on my own, has been utterly exhausting. You can see why I haven’t been able to go to work since January 2023 (when DH died).

On the plus side, Confirmation (Scottish equivalent of grant of probate) has finally come through. It only took a bloody year. And DH’s estate was straightforward, with nobody contesting anything. I can pay the mortgage in full soon!

On the plus side, still no discernible side effects from nab Paclitaxel. I like to envisage it is acting like the Droogs in the Clockwork Orange, going about brandishing their bats, battering everything in sight.

I can definitely see why you're not in work! And it's probably better for DS that you're not?

@Tilllly Yes, I think it helps DS if I am around once he comes back from school rather than being in an after school club. It helps to see him I am around as he is still desperately clingy with me. If I get up to go to the kitchen/bathroom he immediately jumps up and asks where I am going. And he still asks to sleep next to me every few days. Imagine what it must be for a child who is not yet equipped with adults’ coping mechanisms, he must think I can drop dead any second and is petrified. Because if it can happen to his dad, who is to say it cannot happen to his mum.

It can be a bit suffocating at times but I have to remember I will not have the luxury to see him grow up.

@balkanscot
You are an amazing mum. I can't imagine how hard this is for you

My youngest is 20 and struggles with his MH and I am frightened for him when I go - DH isn't strong. My eldest, a doctor, isn't coping with my diagnosis and gets angry with me

I tell you this because it's hard to know I'm leaving them too soon when they still need me. But it's a fraction of what you're dealing with - yet you put your DS front and centre of everything. And you think it thru to do the best for him. I think when he is older, he will be able to see all that and it will be another marker of how much you love him

You shouldn't have to be this strong but I'm in awe that you are

@Tilllly Thank you, I started crying reading your post. I have no idea what I am doing despite reading every publication under the sun regarding children’s grief. But I try to remember who is it I am trying to stay alive as long as I can for. First and foremost it’s because of him. Then, of course, it’s me, I don’t want to fucking die in my early-mid fifties. But of course, our life plans get derailed big time and you just have to deal with it. I still have plenty of black and very bleak moments.

It’s never easy when children are involved, whatever their age. But for my DS he is not an adult yet, has already lost a parent, and he will be entering tricky teenage years soon, probably right in the middle of this shitstorm (if I survive this long). I keep emphasising to my sister in law ans brother in law who will become his legal guardians, how important it will be to be patient and calm with him after I am gone, he will need limitless support and recognition that his behaviour will be shaped by what has happened, that he is not a naughty teenager who needs tougher discipline.

I had an almighty heartburn and sudden redness & flushing of my upper cheeks last night, then I remembered that I forgot to take stupid bastard steroids at lunchtime! I took them last night but didn’t take double dose as the instructions advise against that. Bollocks! I will certainly remember to take them today at lunchtime.

I am back from gamma knife. It wasn't horrific but wasn't much fun either

They did the MRI beforehand and found another 5 tumours, tiny but still.
So SEVEN of the fuckers overall.

So was in for nearly 2 hours but hopefully they got them all. What bothers me is how 5 new ones appeared as I was on chemo and immuno. This suggests they're going to keep happening?

The brain doctor said cells just dislodge from the tumour and land elsewhere, which sounds terrifying, I could have tumours all over???

@balkanscot I'm crying reading your posts. It's only when I think about DS that I cry.

Yet, he is 16, has some extremely good friends and family, and has DH. I am praying that you hold on for as long as you can for him - and for you.

I had 2 businesses and a part time job when I started out all this in 2019. It is only because I got an inheritance that I could gradually give everything up. One business is still running, we are closing it in the summer. I'm living on my PIP and the hospice just said to apply for ESA. I like to be here when DS gets home too.

@Tilllly Well done on getting through gamma knife. How are you feeling? I have been thinking of you today. I'm sorry they found extra fuckers, glad they blasted them.

I had a short brain MRI on Monday, and on Wednesday I had a mask made and had ct scans in it - with and without contrast. I also got to look around the cyberknife suite which really is something else. The mask is to keep my head nice and still and isn't uncomfortable. It's made of mesh.

The cyberknife radiotherapy treatment will be done next Thursday, really early in the morning. I'll probably sleep through it.

I have online parents evening, plus Look Good, Feel better tonight. I slept until 12pm today.

PS I am so sorry Basingstoke said no to the Mother of all surgeries @TwigTheWonderKid

It fucking sucks ass.

Hey all :) I've had some spread for the first time since diagnosis and have been a bit all over the place emotionally. I'll know more on Tuesday.

@balkanscot So sorry, this is all so hard for you, no words really, just big hugs.
@WrenNatsworthy Best of luck for the upcoming treatment, glad you've been able to have a look round and be in the mask and get somewhat comfortable with it.
@Tilllly Glad you've had your treatment. So sorry about the seven fuckers. It's good they nuked them but the fact that they appeared is indeed fuckery. The picture you paint of cells flying around everywhere is alarming. I'm imagining a kind of squash game with them bouncing around all over the place. What we need is... valium for cancer cells? Something to keep them quiet.

@WrenNatsworthy I still haven managed to sort out my PIP. Currently living off DH’s pensions and the rest of his estate. And it’s all double shit when children are caught up in this fuckery of a situation.

@LuciaPillson I hope the spread is not too bad. Let us know how you get on on Tuesday. I am longing for a stable scan. I remember when I had a stable one in August I felt so flat. Because the one before that showed excellent response & reduction. Blimey, I would kill for a stable one at the moment. Next CT scan is confirmed for 8th April. Happy Easter to me!

I have been hit by an awful attack of peripheral neuropathy, especially my feet/lower legs. Couldn’t sleep for the pain/discomfort. Much the same today, with the exception of knocking down some Ibuprofen earlier. I hope it eases off in the next few days. I don’t want nab Paclitaxel stopped or reduced, I want the fuckers nuked into oblivion. Well, stopped in their tracks would be a good start. Fuck, the thought of this being an ongoing thing as opposed to 4 years ago when I had a local recurrence and there was an end of this chemo torture. But now, what a different ball game!

@balkanscot It really is a different ball game (though it's the only one I've known as I jumped straight in with stage 4) and it's a tradeoff between the bad treatment side effects that we don't want but then wanting to attack the cancer. I've actually never had any reduction, only stability since diagnosis. And now not even that. Fingers and toes crossed for your next scan being lovely and stable. So stable you can hear the whinnying! 🐴

The neuropathy sounds nasty, can you get better pain meds that will work for it? I do hope very much that it eases off soon and you get some good sleep. 💗

@balkanscot the social worker at my hospital sorted my PIP when I was an in patient but if you are in touch with your local hospice they will have someone who can help you. In my case, my consultant provided a SR1 form, which basically says I have less than a year to live so mine was all fast tracked but you should definitely apply for it and lay it on thick about neuropathy.

I'm also suffering from PN. Normally it's really bad for about 10 days after I have by Carboplatin infusion and totally set off my cold but I have my last one over a month ago and I've now my finger tips and toes feel weirdly sore yet numb at the same time (a bit like when you burn your finger). DH is cross with me because lied to the Oncologist when she asked me how bad it was but as I don't know what will happen next I don't want to dop anything which might stop them giving me chemo if my next scan shows I need it.

All this spreading
It's just 🤬 💩

Have some Daisy pics

Puppy 😍 Is she as sweet and gentle as the pics suggest @Tilllly or does she have a wild side? I love her ginormous head, her caramel floof and her solemn expression. She is perfect.

@balkanscot @TwigTheWonderKid
I lurk most of time, as I’m stage 4 ovarian but it’s under control (maybe) just now. Scan next week to find out.

I’ve found Alpaca socks to be the best thing for my poor feet. I ordered online and often wear two pairs at night. The fibres seem coarser than cashmere - maybe traps the heat a bit more.

I’ve also been having acupuncture which is meant to help - but hard to tell, and it’s not free.

It was Pairs Scotland that I ordered from x

@LuciaPillson

She's pretty easygoing as far as puppies go

But she's persistent...

She's like a stomach on legs

I'm sorry about the spread @LuciaPillson it's like fucking whack a mole sometimes.

Daisy is so beautiful @Tilllly . My old cat was called Daisy and she was 21 when she died.

Soothing vibes to anyone with poorly feet. I trained in massage in my pre- cancer life so I'm qualified for gentle foot rubs, even virtual ones!

I went to the Look Good, Feel Better make-up workshop on Thursday evening. Everyone else there had breast cancer. I never bump into anyone with Ocular Melanoma although I do know a fair few online. It was a lovely evening, came at just the right time.

I'm still trying to get my head around having gone from no treatment and hoping for a trial for the lung mets, to having Cyberknife in 4 days for the brain met.

I've had a lovely weekend altogether though and feel fine apart from lots of sleeping and a little pain 'in my lungs' that might well be reflux again!

Onwards and Upwards, mateys, Ship Ahoy!

@WrenNatsworthy whack a mole 🤣🤣🤣

I'm saying that to my oncologist 🤣

🤣 excellent, let me know how they respond!

First I was picturing some kind of unholy game of ping pong taking place in my abdomen, now I'm picturing.... moles 😳🔨🕳

If you have moles in your abdomen @LuciaPillson, cancer is probably low on your worry list!

@balkanscot ask your Macmillan nurses if they have anyone who can help with the PIP forms. One of my consultants referred me to a dept of Macmillan locally who did mine for me, rang for my permission to send it, and sent it without me laying eyes on it. I just signed the authority form they sent me. Here they're called Meeting New Horizons, not sure if they're everywhere but worth an ask to save the hassle of form filling in amongst everything else.

@Tilllly I'd missed that you'd had cyberknife - how was it? And how are you now afterwards?

I'm just making a brew then going to arm myself with my calendar & ring about my MRI.