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

[SewingBees]

New thread!

@balkanscot Much of what you say, resonates! I too have become increasingly irritated with seemingly well older people. Of course, I don’t know their situation, but it just pisses on my porridge when I see 86 year old NDN zooming down the road, in full health, being a sly old cow. How I resent her!!

Yep, if you can’t cure me, fuck off. That’s how I feel right now too ( I’m currently sat shivering in my bed , aching with a sore mouth and exhausted from bloody docetaxol on Friday) Anyone had that chemo? It’s the work of the devil! Pray to the non existent god that it does SOMETHING!

I will tackle the ESA form at some point this week, all 24 pages! 🙈

@balkanscot You are not failing DS. You are doing your very best in the shittiest of situations. I doubt anyone would be able to do better. Let’s hope carbo hammers those tumours!

@EachandEveryone any sign of the immunotherapy yet? I don’t qualify for UC, savings are over the threshold it seems.

@sellotapechicken glad you are being well looked after, that’s a good thing. DH has Covid now, after glandular fever? Crikey, it never ends does it? You made me laugh when you said you were cream crackered from doing the square root of fuck all. I’ve done FA today and am back in bed! Holly is such a cutey, is your boy dog called Hugo?

I hope everyone else is getting on okay. It’s a sunny buy cold day in Cheshire, but I’m staying put in my bed!

Gosh it was quick once it came only 30 mins and I’m now sat in Costa I hate coming out at school closing time. I’ll drink my drink slowly then go for an uber

On the subject of blue badges, my car was keyed in a car park the other day when I was parked in a disabled space. I'm so fucking angry about it, I'm sure I was deliberately targeted. I probably don't look very disabled, I limp a bit but not badly and I'm not needing my wheelchair at the moment, but I cannot get in or out of my car unless I can open the door fully.

Police are investigating, it was right in front of a CCTV camera. I hope they find the fucker.

She’s just a border terrier who was extremely hairy but she’s had a hair cut now so she looks tidier!

@enigma54I know, I think he’ll be more prone to picking things up now. He looks very sorry himself! I’m just exhausted from doing nothing 🤣

Yes boy dog who is not pub safe because he will position himself in the way and bark at people who don’t stroke him. He has 2 brain cells left and they’re both fighting for 3rd place

Boy dog, meet girl and boy bunnies!

Haha! Sorry yes I meant to say his name is Hugo 🤣

All those lovely pets. I worry sick about my cats they are so attached to me.

well I’m losing my marbles I literally thought next week was this week and I went all the way to the hospital for a PET scan and it’s next week! I thought my cousin was coming down this Thursday and it’s next Thursday. Is this normal?

the hole in my groin is getting me down. I have to wear nappies in bed it’s leaking that much and I can feel the tumour right near it. It’s got really hard☹️ please immunotherapy kick in soon.

Could it be to do with the stroke @EachandEveryone ?

Well, I text about the out of sync appointments & meds & got an answer this morning...I'll have to go for bloods one day, and an appointment the next...the week before Christmas...so they can approve meds for Christmas week. I don't bloody think so. I have plans on my calendar pretty much every day from now until 28th Dec. & all I need is someone to check the box on the computer to approve them (or however they do it), not extra trips to the other side of town in the last week of school/week before Christmas. Ffs. Never bloody simple..."oh yes, we're booking appointments out of sync, our mistake, we'll rectify it & try to make it convenient".

Nope.

It's like their one main aim is to piss people off!

Already have a billion things to do? Excellent, let us chuck some more jobs at you, to do at the busiest time of year, because we know you'll love nothing more than trekking across town on the bus in the cold/wet/dark/after work, at a time to suit us, because we're not listening when you point out we're out of sync, not you. & why the fuck should getting the meds that literally keep you alive be easy? It must be as fucking wearing and full of pointless appointments as possible. Because you cannot be trusted to moan at us, at full fucking volume, if there's something bloody wrong. Nope...we must waste your time, and ours, to have a terribly polite conversation every 6 weeks where you answer all the questions the same...every fucking time.

& I'm about as subtle as a brick. If there's a problem, they'll know about it. With bloody bells & whistles.

Cancer doesn't get any more of my time. It gets too much as it fucking is!!

@SewingBees Absolutely despicable behaviour! Has there been any progress on who did this? I fucking hate when people assume you are fine when you are not.

Hello from the cancer assessment unit! 👋 I had the roughest night last night, stomach cramps, diarrhœa, being sick, fever, the works! Finally phoned the cancer treatment helpline in the morning, of course I was admitted. Pumped full of antibiotics and saline, they think it is to do with Carboplatin side effects, my neutrophils are only marginally low (1.4). They even mentioned flu at some point. 🤷‍♀️ Had chest & abdominal X-Rays, hopefully nothing to see there. DS is understandably getting spooked and I had to arrange for my in laws to come down (3.5 hours drive). Fucking delights of being on your own trying to arrange childcare when you have been up all night feeling crap.

I am hopefully going to be discharged tomorrow.

@balkanscot oh bloody fucking hell. What a mare for you! I really hope you start to feel better soon. That’s the problem with chemo, you never quite know what’s causing what. Is that the first carbo? Sending healing vibes/ wine/ chocolate/ whatever you feel like.

Still feeling like death, post docetaxol. Whatever is in that drug, my mouth, bones, stomach and bowel, all hate!

@Enigma53 Forgot to say, I had docetaxel (in combination with Carboplatin) 5 years ago and it was a heartburn/digestion hell. It belongs to the same category as Paclitaxel (taxanes) and is rough. My oncologist was surprised I didn’t get along with Paclitaxel (had an allergic reaction) as I “got on” with docetaxel (got on in the loosest sense). All these chemo drugs are fucking awful, they kill all the healthy cells quite nicely but would they kill cancer cells? Would they fuck! Sorry.for being all arsey here, it is just that in my experience what has worked for me have been targeted drugs and not generic chemo..

This was my 2nd dose of Carbo, never got these awful side effects then. And not after the 2nd dose, boom!

@balkanscot see this what I’m struggling to understand. When I eventually got used to ribociclib, it destroyed my lung tumour in less than six months and so far, has kept it “ asleep “ But this new fucking beast, well it won’t be killed. Doxorubicin made it grow ( how???) and took my hair and soul. Docetaxol has stripped every bit of living skin and good from my body ( even the inside of my nose looks a mess!) Yet it’s only slowed growth!!

Anyway, are they discharging you today? How is DS?

@Enigma54 I shudder every time I hear/see the word doxorubicin. It was by far the worst chemo I have ever had. I felt like I was literally dying for about a week after each treatment. I absolutely dread if I ever have to go back on it again.

Guess what? I am the youngest one in my bay. 2 out of 4 have got Zimmer frames, the other one who doesn’t has got grandchildren. I just can’t get used to all this.

DS is a bit better now that he managed to see me last night but really wants me back home today. Still waiting for my repeated blood test results to find out if I can go home. Everyone says “Oh, I bet you can’t wait to go home.” I kind of like it here because everything gets done for you. Whereas when I am at home, it is all down to me which gets madly frustrating. But I do miss DS and want to reassure him that (for the time being anyway) it won’t be like his dad, gone to the hospital, never to come back home again.

The other thing is that on the ward I can catch the smell of the waiting room/consulting room that I go to when seeing my oncologist to hear CT scan results. NOT a good association, it gives me complete nightmares because so many times I have sat in that room hearing bad news.

Yep, the youngest one after me was born in 1948!!!! The oldest in 1930!!! The third one is not that far behind. I can’t help myself listening to peopole’s dates of birth. It always confirms I am the youngest by far. And it fucking stings.

@balkanscot doxorubicin is the work of the devil! Evil stuff. My hair fell out on day 18 and I was mortified. Second hair loss and I don’t recognise myself!

Any news on your bloods? I know what you mean when you say you prefer to be in hospital because everything is done for you. However I’m sure your DS would feel better having you at home. It’s tough on the children. My own DS who is older ( but still a teen) constantly asks me if I’m going to die. And suddenly his face goes into childlike expression and my heart hurts. My partner/ DS’s dad has Parkinson’s but currently stable. So yes, I imagine you do get irate with the older people on your ward, as it’s a hard slog to keep everything together as a relatively young person living this shit.

@balkanscotwhen I was in hospital 1st time round recently all of us in the bay had various stages of cancer. Mostly stage 4 though. Apart from one lady we had with us for 2 days and her visitors were staring at me so I made my mum close the curtains. Her boyfriend was talking about how he was doing really well with dealing meth without her. When Jon came to visit she recognised him because she was his client so when he walked in she shouted ‘I’ve been here for 3 days that’s why I wasn’t in fucking court’ he just looked at her and said ‘I’m here for my wife’ and then when we went for a walk (visiting ends at 7 so they would let him on the ward at 7.45 but only to tell me he was there and we had to sit on the corridor) he asked how I was enjoying spending time with Methany which made me laugh. That night I dobbed her in to the night nurses for eating the clinic wipes they use before blood tests to get drunk. She was moved and replaced with a nice lady who was post mastectomy. Order restored!

I have a scan today I already know what it's going to show because my ca125 is raised. So it just about showing the extent of it before starting chemo pacitaxol again (bye-bye hair again).
I only saw my oncologist last Thursday and he said he would book a scan then the the appt come through on Monday for today. The follow up appt with him is also already booked so I think my first chemo will be this side of Christmas.
I also find it difficult to see very elderly people in the chemo suite it seems so unfair. When I was in hospital there was a young woman opposite me who looked like she had only just moved in to adult services I think I was probably older than her mum! Maybe she thought the same about me!

@Walkingnotrunning1 best of luck with your scan today. Is a raised ca125, definitely indicative of live cancer again? I really hope not. But if it is, let’s hope the chemo will knock it into submission again!

Feeling really low today. Woke up in tears. I hate this so much. I had a text from a colleague last night and honestly I wish she hadn’t bothered. Maybe I’m just menopausal and irrational 🤷‍♀️

@Enigma54 in ovarian cancer ca125 levels do seem to be quite reliable but not in all cancers I believe.
Thanks for your wishes re scan and I hope your spirits lift as the day wears on x

@sellotapechicken A new lady came in last night. Answering phone calls on speaker, of course. Loudly complaining to her partner that they never brought her sugar with her cornflakes for breakfast. Also, apparently, vegetarian options are “shite” and “absolutely crap”. And apparently, jam is no good as it is just for scones and nothing else. At least her date of birth is 1966, so only 6 years ahead of me.

@Enigma54 I may get discharged later on this afternoon. Still need to give one more 💩 sample. Bloods are fine, mildly elevated liver function which has sent me into a spin. Senior doctor said last night it is most likely due to Carboplatin, junior doctor this morning said Carboplatin doesn’t usually cause that. Even though Cancer Research, MacMillan and Breast Cancer Now say that it can mildly elevate liver function. I have been drenched in cold sweat on and off ever since. DS is seeing a friend this afternoon and is raring for me to come back home. He has been through so much in his 13 years.

@Walkingnotrunning1 I understand that somebody younger may look down on me the way I look at pensioners (even though I am now myself a pensioner, through ill health). I am just extra bitter because this cancer will wipe away the last parent that DS will have, making him an orphan. How do you get through such trauma and lead a life that is not constantly blighted by this fact, I don’t know. He has had counselling already but it is a bit of a stop-start as he is still not quite ready to open up his defences re: his dad’s death. I hope that your CT scan results are reassuring - it is impossible not to worry, though. I go through a massive psychological trauma every single time.

Can’t edit previous post anymore. It is exactly what happened to twin boys of The Stone Roses’ bass player Mani who died yesterday. His wife died of bowel cancer 2 years ago. Now their twins are without both mum and dad. It has completely broken me reading about it. Also, I am of that generation for whom their first album was a massive influence.

Yes I can’t stop thinking of it either. They are 12. I hope they have lovely relations that will take them in. They must be so confused.

Totally my era and I lived in Manchester at the time. They were some of my best years. I’m like that dad from the John Lewis advert.

I hope they have family/ friends to take them in. My dad died when I was 12 and it was really difficult as my mum had to be mum & dad when I loved my dad so much and he was amazing. I was a real Daddy’s girl and then he died and I love my mum a lot. She’s a vicar and absolutely lovely but I really struggled with my relationship with her even now. She’s thinks we’re really close but actually I feel like I have to make sure she’s not upset. I love her but it’s a complicated process

@balkanscot are you home now? I do hope so.

How’s everyone else?