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

[SewingBees]

New thread!

@balkanscot It’s definitely cancer pain. Cancer 2 is a huge tumour in my pelvis, pressing on nerves and groin. I can’t believe this godforsaken docetaxol hasn’t done a thing!

I hope you’ve tucked into that steak sandwich now? I hear you re: the anti biotics. Most give me diarrhoea or like you, nausea. Yeah soldiering on, we are expected to soldier on! My brother gave us some Christmas money this week. No “ how are you? ” no “ sorry life is fucking shit and you can’t work and you have a scan next week and results after that ( which will be shit) Nothing.
I can’t even join the FB group for this cancer as they are all dying ( literally) and I can’t face that yet.

@EachandEveryone I echo what @balkanscot and @Sausagesforever have said. I’m angry they have left you in this state. It’s inhumane and I feel they shouldn’t be leaving you like this? How can you travel with this wound? Can you walk? I’d be inclined to rattle some cages tomorrow to get this sorted.

@Sausagesforever FIL sounds a pain? I hope he behaves! I think 3 nights/ 2 days is plenty.

It will just be the 4 of us this Christmas. I will try and see my parents in January
( pain depending) I’ve a CT on New Years Eve, which I am not looking forward to!

@sellotapechickenI hope DH is being reasonable now? Are you doing surgical work now? ( I think you said you did an operation this week).

No I see the district nurse daily and the tvn weekly they honestly don’t do anything except dress it and then the dressing falls off due to all the leaking. She told me the tumour felt very hards today. I don’t know if the immunotherapy is working or not

They think it’s okay for you to have to wear nappies and large pads? What is the fluid? Is it from the tumour itself? x

After a week in hospital & nearly 3 weeks in bed at home, I finally went swimming again today. I’m your typical post menopausal cold water swimmer. It was so good to be back in a lake. I had to double dose my morphine afterwards & go to bed at 5.30pm but I’m taking the win.
i have my carer for the day tomorrow, so tempted to get her to wrap my Christmas presents because I’m lazy & incompetent.

It’s lymphatic fluid caused by the tumour. I read my last scan report and it said it has doubled in size and it feels rock hard. I’m just clinging on to the fact that the immunotherapy might be working as it says it can get big and harder at the beginning of treatment.

I had a nappy on today with some night time towels. I had to go to tvn get my leg dressings removed. Then I had to go and get my picc dressings done. Then my nails and by then I was mortified i had to wrap my coat around my waist to sit down on it.

That’s just awful @EachandEveryone totally undignified for you. Are you traveling tomorrow? If so, please take care and I hope your mum is a bit more supportive towards you x

Merry Christmas all. Very thankful for our little corner of the internet

Merry Christmas everyone. I hope you have a peaceful, pain free day, what ever you are doing x

Happy Christmas everyone, im
conductonh Christmas from a chair in the kitchen and hoping to get through lunch without passing out, then I will have a very big nap.

Wishing you all a peaceful Christmas ladies 🎄 xx

Yes is anyone else freezing? I’m sat here stinking changing pads hourly. Hope u all had a lovely day.

Happy boxing day everyone I hope Christmas was tolerable.
I found it difficult because I kept thinking that's the last .... I'll see and the mental strain of that was exhausting.
Today I'm sad because my town has a annual 6 mile race (running). It's good fun everyone dresses up and this is the first yr in a while I haven't done it with friends 😭
We're off to lunch with my step daughter today they are gluten free vegans. Usually I would embrace the thought of a chance to be meat free after a day of complete indulgence however I just don't think my poor digestive system can take all the fibre. They also have a cat and a dog and I have pet allergies I would normally take a antihistamine but is that safe with morphine?

Happy Boxing Day all.
Although mine was quiet with just the 4 of us, it was also tricky as I was thinking it might be my last one too. Pain wasn't great and that scared me.

@EachandEveryone did you travel north in the end?

Yes im
here now catching up with Emmerdale my poor 78 year old mother has looked after me by throwing me in the shower despite me saying that I’m not allowed to get my dressings wet! I mean I felt better for it but let’s hope I don’t pay for it further down the like.

we are having people over today which will
be nice. All thoughts of it been my last Xmas have been pushed aside. I wouldn’t be surprised though.

On the 'is it my last Christmas' theme I was at my sister's yesterday and overnight (just home) and I was massively grateful to be there. 2 years ago I was newly diagnosed stage 4 and had no idea of my prognosis (still don't really) and was wondering then if it would be my last. This time I was there without (now ex) husband which made it all the sweeter.

although it’s oh so likely to be my last, I’m hoping for one more. It was an in-laws Christmas & I want my last to be with my side of the family.
i managed a Boxing Day swim in the river which was cold & glorious.

Belated merry Christmas! 🎄 I have spent 7 days on acute oncology ward. My port was finally removed and I have never had so many IV antibiotics and fluids in my life!

I also found out about my scan. As predicted, it was crap, the biggest bastard has grown by 30% in 3 months. I can’t say I am surprised because I never had any faith in Carboplatin in the metastatic context. On to Eribulin now but it is really looking like I am at the very edge looking into my own death. But I am not giving up, fucking fucker can just go fuck off.

I am finally been discharged today and going up to the Highlands on New Year’s Eve, can’t wait to see DS. I keep thinking if this was my last Christmas and I didn’t manage to spend it with him… 🥺

@balkanscot oh my! You’ve been on acute oncology, all over Christmas? You poor thing, that is utter utter crap. I’m pleased you are being discharged today and soon to be reunited with DS.

Let’s hope erubilin is the drug which puts the brakes on things. It’s a god awful hellish journey.

I’ve had my appointment with the pain team brought forward to Wednesday. I feel as though I’m slowly dying it’s so bad now. CT on Wednesday too and results ( meant to be 13th Jan) but no doubt the scan will show huge progression and they will call me before then.

Nothing else to report, except my quality of life has been reduced to zero. So much for “ living well with cancer”

The tvn just said speak to oncology about this loss of fluids through the hole and gave me massive pads that are irritating me like mad. I need to have. Franker discussion with him on Wednesday but I’m terrified to. My tumor is in my groin and feels massive so I don’t know if the immunotherapy is working or not.

I feel I’m slowly ebbing away. I have no one to help me get washed and my cleaner has resigned.

lets hope we have a bearable new year

@EachandEveryone yes let’s hope we all get to new year in one piece. Can you advertise for a new cleaner? What happened to the carers who were coming in?

They did six weeks and then wanted &250 a week to the council I can’t afford that.

@Enigma54 Yes, I had been there for a week. I am all bloated from antibiotics, fluid & not moving but in my head all this is from liver mets.
Keeping absolutely everything crossed for your stable result. The holy grail. I hope a discussion with pain management team will bring you some relief. The lady opposite me was in horrific pain from the tumour pressing on the nerves and from her treatment (primary cervical cancer), it was just awful hearing her screams. ☹️ I feel horrible for saying this, but finally someone younger than me, 47 years old. That doesn’t happen very often.

@EachandEveryone It is utter crap being on your own, I can attest to that. I am now left in the flat on my own. Friends have been and gone, I fear I am going to have a massive psychological wobble overnight sleeping on my own for the first time since 22nd December.

The general message about dying of cancer is that nowadays it is pain free. What no-one tells you is that living with it (while also dying of it) can be absolute agony, physically and mentally.

I’m not worried about the dying part & right now I’m relatively pain free - not in general scheme of things but in cancer scheme of things, but the bit between now & dying worries me. The not living, just existing part.