Thread #5 for those living with incurable cancer, supporting each other and remembering the lovely friends we've lost along the way

[SewingBees]

New thread, an open invite to anyone living with Stage 4 cancer to share your worries and joys and just generally chit chat about whatever you're going through today x

That’s twice in a week

God luck @EachandEveryone x

Good luck

How did you get on @EachandEveryone ?

How is everyone else doing?

@GoldenDog1 I'm sorry I missed your birthday! I hope you had an enjoyable day x

I'm a little bit concerned about the changes that are proposed to PIP - will I lose it & have to work ft? I'm already knackered by the time I get home & plan how I spend my time carefully so I can do the fun stuff with the girls/go to bed stupidly early most nights so I function normally the next day - working ft would totally wipe me out & mean I wouldn't be able to do half of what I do now. (There's a thread in Chat that has me wondering - I'd post there but I suspect I'd get a lot of "why should 'we' pay for you to work p/t & go to gigs!"). Yay for something else to stress and eyeroll at I guess 🙄🥳

I just got mine for ten years I really don’t think they will come after us.

i got back from surgery about two hours ago Inhave some kind of pump attached to me. I don’t know what the out cone will be. I’m so bloody hot in here tonight.

Mine's up for review next year, I think I'm going to call the people who did it for me last time & ask them to do it again.

@lucysmam not too bothered about my Pip right now, as it’s fixed until 2027. As it is, I’m unfit for any work, let alone part time work. My Pip is paying for my petrol to and from hospital, Ubers if I can’t drive due do fatigue or pain and allowed me to drop a day at work when I was just dealing with the SBC. I am also aware it is funded by taxpayers and before the metastic BC, I was more than ready to find a non term time job as I don’t need to work term time. But at the moment I’m stuck.

@EachandEveryone how are you getting on?

@Whatevershallidowithmylife are you okay?

Try not to worry about it. It’s not as if things have improved.

i slept well the drain seems to be working. My i don’t know what the plans are tbh. I’m in a four bedded ward on my own for now. The food is appalling and I can’t go out I wouldn’t trust myself anyway.

i hope you are all enjoying the sun, I’m desparate to get my hair washed

How is everyone enjoying their bank holiday Saturday? We’re babysitting our 2 nephews one is 3 & one is 10 months. Their dad is my husbands identical twin and instead of calling him uncle xxx he calls him ‘Uncle Daddy’ because obviously they look identical apart from glasses. It’s adorable but also a teeny bit sad as we’ll
never know what our kids look like & our older nephew looks exactly like Dh and his brother. Ugh pass the wine!!

@sellotapechicken that sounds so bittersweet. I hope you can enjoy the time.
The thing about having children - is as they grow they need many influences and relationships. I know you have pain with probably/ possibly not having your own children - but you can have a wonderful and important relationship with these children. Don’t underestimate it at all
My mother has never been a good mother. It’s not important to go in to here. But my relationship with my aunts in the time I’ve had this cancer has been very important to me. One doesn’t even live in UK, but she supports me beautifully with her honest and loving messages.
xxx

That’s really helpful thank you. I will try and reach out to
them more. I do find it find !!

Hard not find!!

How is everyone?

My mouth is so sore, it’s horrid 🙁
By far the worst side effect of this shit.
Feeling very sorry for self. Watched 3 hours of shit channel 5 TV under my duvet yesterday, whilst contemplating my life at nearly 54 and which direction it’s currently ( not!) going. Huge sigh!
Do I return to work after half term?
Do I even want to return to a school based job. Why didn’t I stay in teaching? (my pension would be much better now). Why didn’t I find a different career after leaving.. Urghh all these decisions I’ve made have not been the best!

@sellotapechicken I agree with @RedRosesPinkLilies I can imagine things are bitter sweet around your little nephews. You and DH can be great influencers in their lives. be part of their lives and enjoy being around them. Try to build a good solid relationship with them 😊 Life eh? What have you decided re: surgery?

@sellotapechicken oh fucking god, I’ve just realised my next chemo will be gem- tax if doxorubicin definitely doesn’t work. Oh my lord!

I am still full of this shitty fluey thing! Snot for days and days and days. Woke myself up coughing at 8:30 - scared the cat off the bed 😥. I'm actually just off back to bed for a bit.

I think what I actually need is some proper rest - alone. On my own. No one around at all. Not sure if the tiredness is that or the meds though. Mix of both maybe. I'm more knackered, earlier, than I usually am 🤷‍♀️. Fucking blah!

Need to shake it off by half term - we're off to Manchester for a gig & overnight.

I really want to do things too - got zero go-go to do any of it right now!

@lucysmam sorry to hear that.
It’s not the cancer making you tired? I can’t remember what you have exactly

Currently avoiding our dog because he’s just been given kennel cough vaccine and it’s a live one (I didn’t think). So me being immunocompromised is a theoretical risk I could catch it from him.
Problem is that I’m the only one in so he’s bored and trying to follow me about. Joy

@lucysmam probably just asking as I’m knackered due to chemo right now. I can only do so much before I have to lie down. Very frustrating

I’ve just taken my drain down to m and s. I was shaking like a leaf terrified I would start bleeding again. I bought an egg and salad cream sandwich!!! I never knew they still existed. Also a nice coffee and brought it up to the ward I think in future I will go down and sit with a nice toastie or something.

Ive no idea what the future holds. My family want me back up north but thats like signing my death warrant as far as I am concerned. The dream would be to get a council place in London and go between both. I need London stimulation I’ve been here 35 years! I can’t be punished for being single all my life. Me and my mother don’t even really get on! As if they’d be looking after me,

God there’s a pain in the arse woman on the ward shouting and screaming that the nurses and cleaner are trying to kill her cos she tripped over a bucket. She’s so rude they are all scared of her

@RedRosesPinkLilies I think it's probably a bit of everything tbh. It's shitty, whatever it is <yawn>.

@EachandEveryone sarny sounds tasty! Maybe I'll boil some eggs and make myself one 😋.

@lucysmam that’s a blow you still have this virus, it seems to be lingering. Maybe a good rest will clear it up properly? I’m also exhausted ( from
chemo) IV chemo is harsh and I’ve no.4 next Wednesday. Dreading that as my mouth is raw right now! I think we would all like to be out and about doing stuff and going places. Unfortunately stage 4 cancer means gruelling treatment and or symptom control with meds, leaving us open to fatigue etc. I was even contemplating returning to work after half term, but then thought, crikey, but what if I do need to move to treatment 2; I’m back to the beginning again!

Such uncertainty eh? 🙄

I don't even really want to be out and about loads. I have a book I want to finish and a crochet pattern I want to start. I just have no motivation.

I seem to have some sort of bumpy, itchy, weirdness going on on my upper arms too 🙄. Going to try some antihistamine cream & go for a short walk for some fresh air...see if I can find some motivation along the way.

@EachandEveryone definitely you decide where you want to be. Do not be moving anywhere that decreases the quality of life you do have.

@Enigma53 will they do the chemo if your mouth is that bad? Can you drink fluids? I’m not sure what the reasons for not giving chemo are. Infection will be one, but quality of life on it might be one too.

@lucysmam hope you get better soon.

xx

@EachandEveryone that woman sounds a nightmare! How are you feeling now? I think you should stay put in London. I can’t imagine you would settle anywhere else after 35 years? Plus you have your friends in London.

@sellotapechicken I can't pretend to understand or relate to your position regarding children.
I agree with what the other ladies have said regarding your nephews.
My colleague is in a similar position regarding children ( not cancer related) and the relationship she has with her nephews and nieces is inspiring.
It's wonderful to see.

@Enigma53 sorry to hear you are still suffering with a sore mouth.
A couple of months ago, one of the Oncology nurses gave me some sachets to try when the usual mouth wash they give me wasn't doing the trick.
It is called gelclair.
It is mixed with water but can also be applied directly into the mouth with a sponge or swab.
It was much more effective.
Might be worth asking about it?
I hope you get some relief from it ASAP.

@RedRosesPinkLilies I understand the catastrophising.
I'm trying really hard to not do it.
I have this thing in my head that I'm going to stop worrying about things that are out of my control.
It is easier said than done though.

@EachandEveryone I also didn't know you could still get an egg and salad cream sandwich.
Hope you enjoyed it.
It's awful when you get patients like that on a ward.
They can be quite scary at times.
Do you know how long you will be in hospital for?

@lucysmam it's so weird that you are still suffering with that fluey type thing.
Have you spoken to someone about it?

I've spent the last week feeling relatively 'normal'.
A bit low on energy, but apart from that I've been doing ok.
Last week was quite busy, but the past few days have been lovely and quiet.
I've just been pottering around the flat and the garden.
I'm back to chemo tomorrow though after my week off, so as is the norm, I will walk in feeling OK and walk out feeling like shit.
My CT scan is on Sunday and hoping they will have the results ready for my next appointment with my Oncologist on the 19th.

Does anyone have any plans for today.
I'm having another quiet day at home.
It's quite breezy up here and is feeling rather nippy.

Love to you all xxx

Yes and I know I would never have got immunotherapy without him fighting for me. It just wouldn’t happen. I know at home it’s expensive for them to come down on the train and paying for hotels but I am happy to do that for them. I have free travel here. Free tickets to shows and concerts. My aim is to try and get better as much as I can and get back to work in some capacity