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

[Tilllly]

New thread
All welcome, reluctantly

What was the name of that charity who do holidays for dying people?

@WrenNatsworthy is this the one you were thinking of?

@GoldenDog1 well done for advocating strongly and getting them off their ass to do something. Why it needs to be so much work when it clearly causes the patient increased stress to have unsatisfactory answers I'll never know. Let's hope for a good result!

@RedRosesPinkLilies oof, well I suppose positively you are able to go still do what you love despite the worsening situation. Take that as a plus and go beat those odds.

I'm on day two post first infusion and I can't believe how fast everything is improving. I may be able to sleep like a normal person by end of next week. I have almost no stamina though, and one of these drugs gives me D and a lot of wind and loss of appetite. The fatigue and muscle aches I could do without but I am almost able to relax in bed and do things like read a book, which I haven't been able to do for so so long. I was just on the edge of going insane with the pain and delays, so its finally nice to feel improvement even if its going to take time and a lot of bumps to come.

Might be, I'll have a look x

@HerbalRefreshmentt i am so pleased it's a bit easier. Good.

@HerbalRefreshmentt yes I'm tired of having to fight for everything. I was going to say that since my terminal diagnosis I feel like I've been thrown on the scrap heap but the reality is I was thrown on the scrap heap long before that.

I'm so glad you are feeling better, long may it continue to improve.

I have looked at this site before.
Is it just me or is it really off that there is a listing that says "breast cancer only"?
It's like discrimination against other types of cancer.

Maybe I'm reading too much into it cause I'm feeling a bit low but I do find it odd.

@RedRosesPinkLilies my latest blood test result shows my CA125 has gone up into 1000+ meeting with my oncologist next week to discuss change of treatment . This will be my second reoccurance but hopefully there will be more treatment options.
The same as you I find it really difficult to reconcile feeling well with actually being quite unwell. I've read so many success stories with Niraparib why can't it work for us?????
I've got an appt for a filing later I actually just want to drown my sorrows in a vat of 🍷!
maybe just a plain CANCER SUCKS should be the next thread title

@Florsilvestredelcampo I do wish there was a laughter emoji instead of just thanks
The laughter is clearly ironic.
I hope we both get some kind of good news soon xx

Maybe mumsnet will create us some kind of gallows humour emoji!!

I remember Mowly venting that she wished she could have a nice curable breast cancer, bit of chemo and then another ten years or so. Sometimes you
might just need to say the inappropriate thing just to get it out of your head.

You feel what you feel don't you?
It's like me feeling mad at my mate when I thought she was trying to compare my situation to her husband who had 2 cancerous cells in his prostate that have now gone.

Anyway if it is breast cancer only I'm done.

@WrenNatsworthy why don’t you email and ask them? I’d feel better just making the point. Tell them it’s spread to your breasts!

Its very unfair to discriminate between cancers

I was told I had a nice curable breast cancer. Minor operation and some radiotherapy and I'd be fine. Then I had to have chemo. Then I'd be fine. Less than two years later, not fine.

I’m really sorry to hear that @SewingBees
Probably even worse to be reassured and then have that taken away from you. Really hope we didn’t cause offence - apologies if we did.
My outlook has been so crap, that the only option is to be positive

I know my dear @SewingBees. I think Mowly just wanted to vent and say the unsayable - that she was jealous of those women. Even though she wasn't really. It's ALL shit. And comparison doesn't help.
I met someone at the look good feel better workshop with breast cancer who finished her chemo, rang the bell, all that. Now an MRI has showed something dodgy and she's back to the start. It's utterly crapola.

I have distracted myself this evening by binge watching the first 3 episodes of Bridgerton.

@Florsilvestredelcampo I hope you get some positive news from your Oncology appointment next week.

@WrenNatsworthy I just find it really off that someone is kind enough to offer their holiday home out for people going through cancer but then state it has to be a certain type of cancer.
It's up to them I suppose but sorry it is weird and it has irritated me.

@SewingBees I hope you don't feel that any of us were trivialising breast cancer & I'm sorry if you did.
My friend passed away on Sunday from breast cancer and I hate it, I hate it all.

I'm struggling a bit at the moment.
The death of my friend has really triggered some negative thoughts in me.
I'm usually quite a positive person but I seem to have become fixated on my death and worrying about the lead up to it.
I'm going away for a few days next week so hopefully that will help me shake off this sad gloomy mood I'm in.

Crapola cancer - next title??

I know we want to honour those that have passed already, but we’re all going to pass - and time will move on.

Just thinking maybe we need more fighting spirit heading up the thread. Obviously none of us can really fight to win - but we can remain indomitable

At least, I think that’s what I need. I have a lot of people up this weekend- for a good reason - but they all know my cancer must be back and a fair few are Drs, so they know how bad that is.

So I really need to stick on a brave/ positive face and not expire in a lake of well meant sympathy.

Im really happy with sympathy from those also going through this. We know how much we want to be normal, I feel others just see us in terms of cancer now

I'm not offended by anyone's posts. I didn't see Mowly's original post and context is everything. We're allowed to be jealous of those who seem better off than us.

@GoldenDog1 I'm really sorry to hear about your friend and it's understandable that it has hit you so hard. Do you have people you can vent to in real life, who you can share your innermost feelings with? It's so important that we get the chance to express how we feel.

I have a different perspective to you about the 'breast cancer only' listing. I live in a small village. 8 years ago some people moved in and developed their land to include a cabin and glamping pods. They offer these free to young people with sarcoma and their families, because that was the dying wish of their daughter. She died of sarcoma as a teenager ten years ago. There are 3 people I know of in the village with different cancers, including me. Another neighbour is dying of a non-cancerous disease. I can't imagine any of us thinking it appropriate to tell them that what they're doing is wrong, that they should be offering holidays to other dying people.

I do understand the frustration but we need to be compassionate to not only those suffering this terrible disease, but also those seeing us suffer and who will be left behind when we're gone.

@WrenNatsworthy how about Penny Brohn they have a retreat coming up on June . They're based on Bristol &the house and the grounds are spectacular . On Sunday I watched countryfile and they featured the Sharpham trust who also hold retreats.
@RedRosesPinkLilies I also have a big weekend coming up . My son (11) plays electric guitar and is playing his first gig this weekend I get to be a very proud mum wiping a tear of pride away, I warn you there's going to be photos!
It's a just reward for his hard work this week he finished SATs yesterday even going in at 7.30 one morning to sit a paper before going to a hospital appt! His calm and resilient attitude to it all had been the big win.
So I will follow his lead I will pull up my indomitable pants and keep on carrying on!

Indomitable pants would be a great title for the next thread!

I was just going to say that too 🤣

heh - like a little noose around a laughing emoji (maybe in a dark grey rather than a bright yellow) would work? That or a tiny guillotine. Surely there must be a place somewhere people have made dark humor emojis.

Let's make sure Tilly is memorialised in the next title at least, though I hate to possibly see Mowly77s name get dropped if there is a limit. She brought us all together to laugh, cry, share frustrations and trials (and have we had trials across this group!)

I think breast is just more prevalent and gets more coverage/funding, although bowel seems to be getting 'popular' in awareness, which is good. A lot of cancers cross-post drugs, though, so even if something is found to work for breast due to breast research money, it can sometimes then be applied to others. Either way, it all sucks for everyone involved, which is why I hate that pink ribbon - im not getting cured of the 'didnt they cure that?' cancer and there are plenty of other flavors available that cause just as much distress.

@Florsilvestredelcampo you should be one proud mum with your son's achievements and his resilience and or hell, I forgot the word. Not morals, you know waves hands. Established compassion and empathy and yet solid sense of self. You will be leaving a strong legacy through him and you clearly did a wonderful job.

Tilly, Mowly 77 and Indomitable pants?

think they would like something like that

And let new peeps know this is the stage 4 incurable thread maybe?

Yes you are right
Either we drop the idea, or we just have really long thread titles
@WrenNatsworthy - how are you doing?