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

[SewingBees]

New thread!

Hi
still in hospital- my lunch seems to have stayed down, although I have been sleeping. Meant to be being seen by the palliative care team - it’s all very slow. But best place for me.

Hey how’re you doing? Slow is good. Sleep as much as you can! Xx

Hi @sellotapechicken
I’m definitely better than yesterday. I think I’m pretty backed up on the abdominal X-ray. So when they sort that it could make a real difference. But it’s very very slow. I don’t think one ward communicated with the other about what needs done/ ordered - as this ward seem surprised I’ve to have a CXR.
I don’t think it matters really as rest and fluids and anti emetics are helping.

I eat GF. Have to pick from a restricted menu - so I went with chilli - thought a safe option. 🤣Baked beans instead of kidney beans, but also had a distinct sweet and sour flavour. Really weird!

Hoping I might actually get home again x

Oh god chilli made with baked beans sounds absolutely foul!! Will they be giving you something for the sickness and constipation? It’s good you’re getting chance to sleep xx

@sellotapechicken - I’ve had anti emetics and apparently will get supps after the antibiotics finish. But honestly - the way things are here it could be tomorrow morning before that happens

How's everyone getting on?

I'm stressed to the max & appear to have developed psoriasis on my shoulders/back 🙄 <sigh>. Good news - I'm not down to be 1:1 in Sept - I'm off into Y3 with the children I started my job with in nursery 🥳. Nothing much planned for the weekend - I need to decompress before next week, which is exceptionally busy both in school and out, so plan to paint/grumpy clean!

Just debating a trip to the shop for wine 🤔

I have a mixed picture- on the plus side I have been moved to the hospice and my room opens onto the garden. It’s beautiful

I have been given steroids which should help reduce the inflammation that’s going on in my bowels. I think because they can’t move properly because of being surrounded by cancer then the bowel itself becomes oedematous and swollen. It sounds 🤮
But if the steroids work my bowels might calm down and something resembling normality might come back.

I met the Consultant on call for the hospice this morning and she was lovely, I have met a few of the nurses already (through being here to get drains in). So I do have confidence that I will be well looked after.

Love to all xx

I’m doing ok. My immunotherapy buddy died today. Feels unreal

Suffering hugely from new chemo side effects. Been in bed since midday yesterday. I’m due cycle 2 next Wednesday. It ain’t gonna happen if I'm
like this again!

Love you @RedRosesPinkLilies
Steroids seem to be multifunctional. They could an option for me too, to reduce inflammation in groin area. I know I have to take them next week, to prevent allergic reaction from chemo.

@sellotapechickensorry your buddy has died. It hurts doesn’t it? I haven’t heard from my sarcoma buddy either. I fear her scan results weren’t good. In truth, I’m not up to hearing that right now ☹️

@RedRosesPinkLilies are you any more comfortable? I'm glad you're feeling you'll be well looked after, and have a nice room.

@sellotapechicken that's tough. We received the news in staff briefing that a colleague (with a brain tumour) is desperately hoping his op will be brought forward & is having suiciadal thoughts. Awful news 😥

@Enigma53 what's the alternative if no chemo??

I’m so sorry @sellotapechicken that’s very sad and hard to bear.
Also sorry you’re feeling crap @Enigma53 - steroids are a bit multi functional
I hope you get the next chemo
And @lucysmam - your colleague - I’m sorry.

Why are there so many of us seriously ill in 40s and 50s? And there was a 95 year old in a bed outside my room - only her second time in hospital! Had her memory too.

What have we done to ourselves?

Sorry I didn’t see that you’ve moved to a hospice. I think they’re fantastic places. Hopefully they’ll get on top of your pain and symptoms xx

Yeah I know the feeling of wanting to support but also not wanting to address that it’s all hit the fan as it makes it more real 😭

@sellotapechicken - I only just moved to the hospice
I was on the acute receiving unit, then a medical ward and now here. I could have ended up in the oncology ward - but I refused to go there.
Happy here x

@RedRosesPinkLilies I don’t know why so many of us younger ones are being struck down. Sadly, the more older people I see zooming around, the more of a lemon I become ( bitter and twisted!)

I feel you on that one!

how is everyone ?? Im feeling absolutely knackered today.

Ditto knackered! I slept for 3 hours in the day ( un fucking heard of for me).
Chemo made me ill all day Thursday.
Now sat looking at my cannabis oil, thinking, shall I shan’t I! It says take with food, except I’ve had my tea ( if you can call it that, it was so beige!)

@Enigma53 Do I have to remind you of the title of this thread?! 😂

Mind you, I've started weaning myself off morphine. Feeling good after my operation, I can stand straighter and without pain, it's a bit of a novelty actually. Makes me realise how bad it had got. Went for a mini walk today and it felt ok. Ironically I need the pain meds for lying down now, that used to be when I was pain free. Still, it's getting better every day.

Excellent news @SewingBees you are doing well! Keep up the good work!

Yeah, I must remember the thread title! Well I have and I did. Currently sat bolt upright in bed, waiting for something to happen! 🤣

@SewingBees so pleased to see your op went well! How are you managing with dd?

@Enigma53 did the oil help?

I'm in a funk. No one thing in particular causing it - just very meh after the move falling through & having half the stuff here packed. I'm unpacking my paints shortly - they can be re-packed another day.

I'm staying at my sister's for a few days. My daughter is with her dad. I miss her like mad but I wouldn't be able to cope with her at the moment. I need to focus on me for a bit.

Yes, that's sensible. I'd miss my two as well but sometimes you need to be your focus not others around you. Hopefully she's enjoying her time with her dad.

@lucysmam She's doing well, we've been video calling. She's coping with the operation better this time around, partly I think because she's older but also she's been there before and knows what to expect. I'm going to go home on Thursday.

I would be able to parent her as I currently am, but I wouldn't be doing it well, and I'd find her energy and noise quite trying (normally I love it). The peace and quiet of my sister's house, with cat and dog cuddles on demand, is what I need just now.

@lucysmam I hope all goes well with the eventual move. Have you got a new place lined up with the girls?

The oil..I took the teeny tiniest drop 🤣 tonight I will take a little more.

@SewingBees good plan re: alone time whilst in the early days of recovering.

Not much to report here. Chemo 2 on Wednesday ☹️ Scan in a few weeks no doubt. It doesn’t feel real all of this tbh.

@RedRosesPinkLilieshow are you? X

@Enigma53 no, nothing lined up yet. Annoyingly, the house that fell through, has been put back up - at a higher rent per month <BIG SIGH>.