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

[SewingBees]

New thread!

I’m going off for a CT scan tomorrow to check for clots as I’ve got pain on breathing in. Bah Humbug.
my executive function is pretty minimal now so I apologise for not engaging more with you all & what you’re going through but believe me when I say you’re all in my thoughts.

I need a rant through the frustrated tears.

Last Monday I hung about for hours waiting for upstairs lights to be fixed. "Fix" lasted less than a fortnight. I'm exceptionally pissed off being expected to hang about hours for contractors who "forgot" to be here anyway. Why the actual fuck is my limited time not important?? Why the fuck.is it ok for me to wait in for some dick who forgets they are meant to let me know what time they will be here?

I've just been told I really am horrible for expecting people to turn up when they say they will, not waste afternoons I could have spent with my friends...not waste whatever limited time I have just hanging around waiting for people who may or may not turn up.

Y'know...my limited time's not important. Just that of people who don't turn up...

Not me who has used up 2, I think, of the 5 years the statistics predict...

Nope.

The fucking people who cannot be arsed to turn up.

They're important.

Not
Fucking
Me

Not me

Some random fucking sparky who wants to come somewhere between 1 and 3 on 22nd Dec. But won't commit to an actual time.

His time?

Apparently.important

Sit & wait in for him to get here. Because on the 22nd of fucking.December. i have NOTHING to do. Nowt. Not a thing still to be done. So why not waste my time instead of fill it with fun stuff while I can?

Oh, and, if I say no to 22nd Dec...5th Jan.is apparently an acceptable date. At 8am. On a fucking.work day. Because my trust like folks to take random days off 🤔🤔🤔

@Enigma54 I am so sorry to hear about your mum. How treatable/curable is it?
I still remember Mowly’s words of something along the lines of wishing to be having a primary cancer now (at the time). Indeed. How twisted but completely understandable is that??? Primary cancer and treatment now seem like a walk in the park. The end date. That’s what gets me and floors me in terms of motivation: there is no blooming end date! 🤬😩

I think I may be heading for depression. I am absolutely floored by everything, all the everyday tasks seem like a faff to endure, nothing brings me joy, I just want to curl up in bed watching repeats of Frasier. I really cannot be arsed with anything. Weepy all the time. Consumed by death and decay and dying. Can’t face any more pills to treat the potential depression.

On top of all that my neighbour (who used to be a midwife and now works in clinical trials at the hospital I am being treated at) saw my port this evening and said she thinks it looks worse than last time she saw it (Monday. I think). I actually think it is kind of getting better, it is now much darker red rather than raw red but it is still haunting me and if I am not obsessing over my scan, I am obsessing with over my port. Therefore, understandably, this run up to Christmas has been an absolute write off. Can’t stand the sheer amount of people coming out of every nook and cranny in the streets, mindlessly whizzing around shops.

@lucysmam I had a perishable goods delivery booked for last Thursday, thinking it would be along the lines of 8 am to 7 pm. No, it finally turned up just after 9 pm.

Off to watch the Chris Hoy documentary now, it is on iPlayer frim 10:00 pm.

End date in terms of finishing whatever treatment one is on. It is treatment until you drop. Wargh!!!

Do you know what really pisses me off? I gave a brilliant friend, she’s a nurse. A very senior, very experienced nurse. She keeps an eye on me, she spotted a post surgical infection and helped me manage it for the 2 months it took to heal, she told me I needed to get myself straight to a&d once about a GI issue, she comes see me in hospital & makes sure I’m being treated properly like when she noticed I was still on a trolley in a side room 24 hours after admission because nobody had thought to get me a bed, she checks me over constantly & tells me when to worry & when not to worry. Whenever I’m talking to a Dr & mention her they scoff, they vocally & actively scoff. My team are great, but they’re not very available, I don’t have a CNS, I have to go through my consultants PA for every small issue. And I can hear it in their voices “she’s a nurse, what does she know, we are great & mighty doctors ”. Patronising twats.

Rant done.

@balkanscotyes mums carcinoma is treatable with a cream. If that doesn’t work, then it can be surgically removed which is good.

I wasn’t about when Mowley created the initial thread (?) But a few weeks ago, I met an old colleague at reflexology. She had primary Bc and was treated with a lumpectomy, chemo, radiotherapy and immunotherapy. At the time, I thought bloody hell, you poor thing. But then I saw her again and she was heading back to work. Her life resumes, no more treatment. My thoughts changed and I was jealous! How bad is that??

I feel the same. I feel numb, can’t see the point in anything, I’m getting up later and later as my pain isn’t good and all the wretched pain relief gives me side effects! I know I should seek therapy or anti depressants but can’t be bothered. The bitterness is unreal and I literally hate everyone right now!

I’ve got a port too. So far it’s behaved. I hope yours does too.

@lucysmam yeah I hear you! My clinic appointments are always running 2 hours behind, always! They don’t seem to care either! Or maybe they are short staffed, I don’t know, but it’s mega frustrating!

@EachandEveryone how are you getting on?

@Sausagesforever I hope you enjoyed your wedding picnic and DD isn’t too poorly? I’m glad you have such a good nurse keeping check on you, but it’s bad that you don’t have a CNS. Having to go through the PA each time, must be a right nuisance.

Has anyone heard from @EachandEveryone? I did my first operation in a long long time yesterday. Ironically it was to remove a battery from a child. Ironic because of my thread about bloody batteries! Are we all ready for Christmas? I feel like it can fuck off to be really fucking honest.

We’re going to DHs parents who are also medical and they ask me questions and when I answer they know the reality which I hate. We can’t take our dogs with us because they have 5 golden retrievers and 1 is absolutely bat shit with dementia and last time she met Hugo they just barked for 15 hours straight one would set the other off. So my mum is looking after ours.

My sister in law pissed me off so much at DH’s birthday lunch I bought our nephews a trumpet and harmonica for Christmas

@sellotapechicken my SIL thinks sugar is evil so I ply her kids with coca vols & let DD eat all the chocolate she wants. Her kids get ONE chocolate coin at the bottom of their stockings.
@Enigma54 DD very chesty & just generally feeling rubbish, she was an absolute trooper through the wedding so I think that set her back a bit.

I hate people talking about us being depressed - we’re bloody dying. We’re behaving completely normally & rationally given the circumstances.

God I stink to high heaven the tvn said not to dress it just to use what look like large sanitary pads and keep changing them. I’m pitting a wash on daily as I’m getting soaked. I don’t know what is coming out of me. Could it be the tumour?

I have a three hour train journey to hull on Xmas Eve I just hope I’m sat on my own. My mum is already going on about putting towels everywhere I’m so embarrassed I’m staying in your actual house I don’t need towels everywhere

you all know that we don’t get on she’s so stingy with food and is a health fanatic I might have to buy an emergency pack of fags and get an old friend to take me out.

im not taking hardly any luggage it will be full of nappies.

I think I will buy a bottle of baileys and some nice food and have my own little Xmas at home.

this is the third year I haven’t had a tree ☹️

Is it infected? Or is it a fungating tumour? Can they try a vac dressing? Sending love xx

Thanks for the solidarity ladies. I am less angry and frustrated tonight.

Still not a happy bunny by any means, but have decided I'll crack on with what I want, when I want! If it's inconvenient for workmen when they get here then tough - they should actually do as I ask and give me a time so I can carry on my bloody life 🤷‍♀️.

We've broken up for Christmas today. Dd2's sock on. Dd1's at work a fair bit longer than expected so will be knackered when she gets in 💤. Pj's and takeaway on the cards, with wine, then catch up the thread & probably bed so I can crack on tomorrow morning.

I suspect a fungating tumor. Is that bad news?

Not bad but they require some really specific care, have you been seen by tissue viability ?

@Sausagesforever I completely agree. And having to go through it with on my own is currently breaking me mentally.

@EachandEveryone I do hope your medical team starts taking your situation more seriously and not have such a lackadaisical attitude.

I had to phone the helpline again this morning as the port is just not getting any better. I will not be fobbed off until I know what the plan of action is, especially this close to Christmas. I am meant to be driving DS and myself up to the Highlands on Monday. So, I am currently in the cancer assessment unit again, bloods taken, waiting to hear what is going on. Took a taxi instead of car on the pretext that if they do have to take the port out, I won’t be able to drive myself back home. In a way I don’t want to hear about the bloods in case they spook me with some awful liver enzyme results because this will be the only thing my brain will latch on over Christmas.

I see the tvn every Monday

Are you back on immuno?

I feel like I’m the grumpiest woman ever at the moment, DH is in the spare room and I’m not 100% sure why but I don’t really care either

@balkanscot how are today? What’s the port doing? Will you be okay to drive to the Highlands tomorrow?

@EachandEveryone was also thinking of you travelling on a train with this awful wound. Have you got some decent dressings?

@sellotapechicken what’s happened with DH? Have you had a tiff? DD is back from uni and she’s had a tiff with her boyfriend before she left and isn’t in the best of moods! Oh well, hopefully Christmas will be a distraction.

I’m in pain. Told DP I’ve had enough and this isn’t quality of life.

I have nappies and what looks like big pads. I can’t be arsed fo go if I’m honest. Yes I’m on the immunotherapy only two down

He’s been pissing me off for days, I’ve been really run down lately so I’m literally getting in from work and going straight to bed so now he’s pissed off with me because we haven’t seen each other much this week 🙄

@Enigma54 Do you think the pain is from docetaxel side effects or cancer itself? I am also contemplating everything and my quality of life this December has been an absolute sack of shit. Firstly, I had to endure 2 types of antibiotics after I had been hospitalised towards the end of November. Then my port went to shit. Antibiotics for that. Also squeezed in a dose of Carboplatin, so had to endure 4 days of shit from side effects. Then more antibiotics from yesterday onwards CAN I GET A BREAK, PLEASE????

Back home but have to go back to CAU tomorrow morning so that they can do an ultrasound as the doctor yesterday suspected it may be some liquid pooling underneath the port. Finally some kind of an answer. Although he prescribed me yet another course of antibiotics for another 7 days. It is the same type as before, flucloxacillin 500 mg, 2 tabs 4 times a day. They are making me nauseous, I have incredible flatulence and they are making me so tired. I could barely stand for 20 minutes in a deli waiting for my takeaway sandwich, felt reallly decrepit. Bloods were fine, so hopefully it is not my poor liver that has decided to misbehave. Although flucloxacillin has an effect on liver as well. Can’t win. Just have to soldier on for another week. I am so fucking tired of soldiering on. And don’t get me started on timings, I have to wait 1 hour before I can have food - I have a lovely steak sandwich 🥪 on the table waiting for me, but can’t have it for another 30 minutes.

@EachandEveryone have you decided to go on a train to see your family after all? Cancer just keeps on chipping away at our dignity. 🤬🤬🤬

@sellotapechicken has your DH come to his senses or is he still petulant?

I feel nauseaus because of the smell

Oh no, do you mean the smell from the wound?

@EachandEveryone I am not a medical expert by any means, but doesn’t all this (foul smell, constant oozing) warrant immediate hospital admission so that they can get on top of it? I would be very concerned travelling on public transport due to potential serious infection. Apologies if it sounds as though I am preaching, I don’t mean it to sound this way.

God I feel for you all having to travel over Christmas, I’d be inclined to shut up shop and ignore everyone and everything.
@EachandEveryone i agree with @balkanscot - do they expect you to just put up and shut up ? Does your quality of life not bother them one bit. I’m fuming on your behalf.
I have my in-laws arriving on 24th - usually they stay a week but I have brought it down to 3 nights/ 2 days.
my FiL will get very drunk and say something really inappropriate in front of DD