Thread #6, living with incurable cancer, taking ALL the drugs, and remembering our fallen comrades

[SewingBees]

New thread!

@SewingBeesYou are lucky to just be on ribo and to be able to carry on working. Systemic chemo is shit and incompatible with a school based job.
( yes I’m bitter about the whole fucking shit show that leiomysarcoma is!) 🤬🤬

They’ve changed my telephone appointment to a face to face next week now I’m terrified.

@Enigma54 You think I'm lucky?

@SewingBees I’m so sorry, I didn’t mean for my words to come out the way they did. No, you are not lucky, none of us are. I suppose I was reminiscing of my ribo days ( once it had settled) and being back at work. I met with colleagues today and just feel so far removed from the real world. Maybe I’ve gone a bit-doo lalley with this latest cancer diagnosis. Sorry 🌷🍫🍾

@EachandEveryone Try not to panic, didn’t they say the tumour had halved in size a few weeks ago?

Hope everyone is okay.

Hey. How is everyone ? My DH has had another couple of hospital appointments and his bloods all going the right way. I’m so grateful that he is getting better. I feel so lucky, I know I still have stage 4 cancer but it’s so much easier to deal with mine rather than his!

this weekend we’re going to have a wander around the national trust house in the village and then maybe a sneaky pint on the way home. Hopefully the wind blows the cobwebs away

Here are my two doglets who will be coming on the walk. Then the one on the left will go home and the one on the right is a great pub dog so whilst I take Hugo home, DH will take Holly to the pub and get a round in.

Sending you all so much love

Oh aren’t they just delightful?

my wound stinks but my CNS said if can wait until my meeting on Wednesday when they will look at it. I’m sat here waiting for the district nurse then I’m going into town to watch a play with Susan Sarandon in it. It sounds like a snooze fest unfortunately but she’s one of my favourite actors.
if I have the energy I’ll go to Fortnum and masons to buy some tea bags.

Does anyone else hate getting ready to go out? I have so many clothes but none of them really suitable. Or smart. My stomach is massive because of the steroids I feel so scruffy all the time!

When ever I look at Tracey Emins Instagram I think how does she crack on every day and still make art and teach?

Yes, I hate going out, I miss my hair SO much! It was lovely and long and curly. Now, just a grey “ fuzz”

Teabags at Fortnum and masons? You will need to take out a bank loan, surely? 🤣🤣

@sellotapechicken fab news about dh! Why does the other pooch not go to the boozer?

@EachandEveryone yes! I've put on weight - not loads but enough that everything just feels meh! Add the stupid brillo hair that just flops about on top of my head & it's not a good look! I'm coming to London next weekend to visit dd and for 2 gigs...the struggle of wtf to pack/wear when I'll be surrounded by lovely looking young things is very real sigh. I also need to be doubly sure of what I pack because I need to be done by Weds evening & ready to just nip home, change, and grab my bags on Friday after work.

I had a phone call Weds evening to cancel my Thurs appointment (not enough staff...welcome to my world 🙄). They've authorised a month of meds says the Sister who rang & will see you before you run out. Okey dokey.

Except they did in fact not authorise all my meds...& I'd have been off on my merry way if the one nurse I'm not keen on in the chemo suite had her way. I had to argue with her, in front of other patients, that she needed to check my notes & get them to authorise the Zoladex injection and Letrozole. No no no, she says...it'll be correct.

Except it wasn't. I was in fact correct & had to sit about waiting for them to be authorised, then checked, then sent over from pharmacy. All while very conscious that I needed to be home before 2pm because the environmental health inspector was due then.

I then get a ping with a new appointment after getting in. 9:45am...middle of half term when I'm away with dd. Well, that's not happening how they want it to, is it ffs. I made it clear on the phone I am not available half term week & that early early is not do-able. I don't want to get the bus before 8am for a nearly 10 am appointment.

So now I need to ring back & tell them it needs to be changed, before I need more tablets, or they need to authorise the tablets & see me when it is convenient.

Also need to ring the dentist. Rang to cancel my last appointment - funds not available to pay. I'll ring you back to re-book. Except they've text me a 1pm appt on flaming Monday. I'm still in work then for starters. & for seconds, I'm a bloody grown up with my own calendar. Why tf book another appointment when I specifically said I'd ring back to book it myself when it is convenient?!

Does.
My.
Fucking.
Nut.
In.

I'm doing ok, survived last night's storm. It's most definitely autumn now. Just watching my daughter swim, then she's got a play date at home this afternoon so I'll get all the washing done and maybe bake a cake.

I've been wondering whether my recent job change was a good idea - it has been a lot more pressured and stressful than I thought it would be. But I met a colleague from my old department this week and he confirmed what I'd suspected - that my old department was becoming toxic and unworkable. So now I'm glad I moved when I did.

My ex has finally submitted his financial info so we can start mediation. He hasn't booked a session with the mediator though. I had to give him an ultimatum in the end to get things moving, he's unable to actually do anything without a deadline.

I looked at a new development of apartments this week as a possible place to move to. But discounted them now - too small, I wouldn't be able to have a dog, it would be very isolating for my daughter. I'm glad I looked though because it made me think seriously about the pros and cons. I suspect I'll end up in a house but I'll need to look for one that will have space for me to live downstairs in case I get to the stage where I can't manage them.

Are we missing some people on here? I feel like it’s just us four. I hope that they are doing alright.

work is like a distant dream for me right now. How can I have dressings done in the morning and work in the afternoon? The district nurses would never agree to it. Also can someone be a nurse if she relies on her walking stick?

I feel the same @EachandEveryoneand I’m bloody fed up with it. 54 and I’m NOT ready for the scrap heap!

@EachandEveryone yes, you're right. It's unusually quiet!

I do hope everyone else is doing alright?

He doesn’t go to the pub because he’s a massive twat and will bark for treats and place himself in a walkway so people have no alternative except to pet him

🤣 fair enough! Tbf to him he looks like a very pet-able pooch! He's just making everyone else aware of this fact.

in fairness he is very petable and he knows it! It’s the barking at strangers for cuddles that people don’t like 🤣🤣

@lucysmam how’s DD getting on at uni? Did she get the student finance sorted in the end?

@Enigma54 she's having a ball, thanks for asking! She's been to 3 gigs already (bought Post Malone production hold for less than a fiver total!), been clubbing til 5am with upstairs flatmates, plenty of shopping. Good job she has wages really!!

Finance righted itself a week before she moved - I'm so sorry, did I not update!? That week was a whirlwind 🙈. She's entitled to just over 12k - enough for rent! Wages are, so far, enough for food (nice enough for a single person, imo), merch at gigs, and socialising.

That said, I'm visiting at the weekend so expect to be rinsed in Asda and at the merch stand 🤣. I have a bag of things she's requested I bring too - it's heavy as fuck!

Has she got a job already? I’m so pleased she’s got nice flatmates. Are you staying with her?

Ah brilliant. I only thought of her because there are a couple of “uni” type threads on the AIBU forum. I guessed she would have sorted finance out at this point. 12K isn’t bad? DD gets around 8.5K for uni in Bath. Having a holiday job helps HUGELY! She also gets a bursary ( not sure what for, we think it’s for having piss poor parents! 🤷‍♀️🤣) Have fun next weekend! We aren’t going down until December ) Christmas markets and mulled cider!!)🍺

I have my appointment tomorrow. I can’t say I’m looking forward to it. I will take a notebook as no one is available to come with me. I hope they can advise more on this open wound. I’ve concluded it’s the tumour breaking down and I hope the PET scan can make things clearer. I’m desparate to get back on the immunotherapy so hopefully my steroids can be reduced. I’ll be as big as a balloon next week when I meet my mother in Manchester. Which she will delight in telling me. She will also have something to say about every mouthful of hotel breakfast I have.

Once again, I’m really worried about where everyone on this thread has gone???

Hopefully the tumour is shrinking and you can crack on with immunotherapy 🤞🤞🤞
Not sure where everyone is, hopefully getting on with life.

I’ve a CT on Thursday and Chemo not until 24th. I fear chemo isn’t working and days are numbered. Bloody awful.

I hope your appointment goes ok tomorrow. I took a big step back from social media and Mumsnet was making me really annoyed with the fake cancer child threads last week.

I’ve decided to go back to work part time and I had a job interview after Dhs horrible appointment so I’m moving hospitals and not working in the same hospital that I’m a patient in because the lines were really really blurred. I want to be treated like a patient not a colleague.

I’ve also started counselling.

it has really cooled off on here! I hope everyone is ok

Omg I’m in A and E! Honestly I’m on such a high dose of steroids which I’m sure should’ve been weaned down by now. My skin is like paper. That leg I had the artery replacement the swollen one with incision both sides? I banged it on my chest of drawers a full cut the length of my shin so painful and bleeding profusely. I don’t know how long I’ll be here for.

@EachandEveryone that sounds very painful and scary I hope they can sort you out.
I haven't been posting much because I have been trying to stop myself from doom scrolling on sm
Not just Mumsnet but I also find myself watching endless pointless FB reels. To keep myself busy I have been knitting toys there are some local toy drives around Christmas and my plan is to donate them.
As far as cancer goes I have my head firmly wedged in the sand! I have a f2f in November and I'm sure I'll find out more then until then I'm enjoying the relative peace