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

[SewingBees]

New thread!

My son is going to a Halloween party as Ozzy Osbourne. One of his friends (12) didn't know who Ozzy was! A generation that don't recognise the prince of darkness🦇 what is the word coming too?

@EachandEveryone how are you? Home my hoping?

Are u kidding? Still in an and e no beds in the hospital. Surgery was cancelled no one told me and was nbm until 1700. Im in a ward with no windows and five coughing men and piss on the toilet floor. My walking stick has gone awol. There’s no wheel chairs. I just want then to leave me outside in one. It’s unbearable.

Oh good god, it sounds positively third world where you are! How utterly grim. How’s the bleeding?

It’s not normally I work here but they’ve taken the overspills from other hospitals. I’m just in bits there’s no privacy because it’s not a ward environment. You can’t get washed or changed as you aren’t supposed to be here for 24 hours plus. I don’t know if it’s stopped bleeding I think it has but will easily be irritated if I put any weight on it. I don’t know how I’m going to get to the loo later.

Oh dear, not good.
Offering a handhold whilst you navigate this horrid situation.

I slept well was exhausted and the engineers have sorted the heating. No lock on the bathroom door. I’m nil by mouth just as my friend came to take me to the canteen. Hopefully something gets done today.

How’s is going @EachandEveryone?

They’ve stitched my leg up I’m still in theatres waiting for a bed. It’s done now.

CNS came to see me I think she was relieved when the porters came. U fortunately what they thought was swelling post surgery over the iliac is now likely to be progression. I pushed for that scan as I knew it didn’t seem right but weirdly it did occur post op where they went in and when I last had a scan only five weeks ago they all agreed it was likely lymph involvement and on examination it feels rubbery not hard like my groin tumour. They should’ve started tapering off these steroids over a week ago so I can get back on my immunotherapy I asked them to contact me as soon as they had the mdt meeting. I’m so upset I mean if it continues to grow it’s going to cause a massive bleed again isn’t it? And still my head is firmly in the sand…… I just need to deal with my leg first I’ll show you it look away now if you are squeamish

Oh and does anyone ever feel
like their oncologist is stepping away abit? He fought so hard to get me the immunotherapy and yes he has always been quite laid back but recently he’s given me appointments with different team members and it feels abit weird like he’s keeping me at arms length😀😀

Thankgod you have that leg stitched up! What an experience for you. So is the groin tumour the secondary cancer? Is that the one which shrunk when you started immunotherapy?

Oh man, this cancer lark is an absolute headfuck!

Groin was always secondary primary unknown but hopefully gone. Squamous cell which should respond well to immunotherapy but sadly instead of first line it’s third line as no one would fund it without the primary.

the illiac is new and we we’re hoping it was related to the femoral bypass surgery but the scan suggests not

I saw a different cns today who is abit more familiar with my case and she thinks its tge groin tumourvthat has grown. Ill take that as it was responding well to treatment before the colitus started and hopefully it will Don again.
I hope everyone else has some nice plans for the weekend. It looks lovely outside even at this time it feels warm.

Lovely day today. I’ve done a tip run, taken DS to work, done washing, now tackling the weeds and leaves in the garden.

How's everyone doing

Menopause is kick in my arse again. Had a panic attack whilst driving! 🙈

Beautiful autumn day here in Northumberland, warm and sunny and the trees look amazing 🍁

I picked up a new chair which should help my back, and sat on some lovely sofas I can't afford.

Hey how is everyone ? I’m having my thyroid removed on Monday. Was diagnosed with treatment resistant Graves’ disease pre cancer and this operation is 4 years in the waiting. I’m having it done at the hospital I used to work at but I actually love my friends from there so it’s not so bad. Hoping you’re all okay. Anyone thinking about Christmas yet ?

I'm thinking about Christmas. Last year was about making the best of a bad situation - having been forced out of my home for most of November by my ex. The year before I'd just had my first back surgery and diagnosis of metastases, hadn't seen an oncologist at that stage, so I was wondering if it was going to be my last.

This year I'm already thinking about it, I've moved furniture around to make space for the tree (which is really rather big but I absolutely love it) and I bought some baubles today with a John Lewis voucher I had lying around. I love Christmas, all the build up, the lights, seeing people, the school play. So yes, you could say I've given it some thought 😂

Oh fantastic!! I love Christmas. Our little ‘tradition’ is to put the tree up on the 1st of December and then watch Nativity! My dhs birthday is on the 14th and all his life Christmas decs never went up until the 15th after their birthday (triplets) but now he’s an grown up with grown up money he wants Christmas to start on the 1st so that’s what we do! We’ve got a bit of a schizophrenic tree with no theme whatsoever except that when ever we go on holiday we buy a gaudy bauble so on the tree it goes!!

he bought some Newcastle United baubles last year and I compromised on 1 not the whole box!!

we also have a yearly argument about whether tinsel belongs on the tree. Im firmly in the no camp but he will put it on at night in a sneak attack 🥰🤣

I need to hear your Christmas plans!

Yep, I've never been able to put my tree up on 1 December before, but I'm doing it this year. I need to remind myself to take my time and enjoy it this year. I also plan to have my first Bailey's on 1 December, and then every day afterwards until the 31st.

By the way, my tinsel stance is that a small amount of good quality tinsel goes on first, pushed far into the branches close to the trunk and winding down the tree. It brightens up the dark bits on the inside when the lights are on.

Controversial!

See in previous years I’d have hard disagreed but he did a really sneaky good job last year and I didn’t notice for ages except for that the lights were more twinkly…. So I think I might agree (don’t tell him)! I have an old colleague (nurse) who said she loved Christmas because she could put baileys in coffee instead of milk and was shocked when we broke it to her that it was highly alcoholic as she’s been slugging it in her coffee in December for decades 🤣 she thought it was mainly ‘festive milk’

I had a ureteric stent fitted on Monday which was billed as a 'mildly uncomfortable procedure' why do Drs lie about this things are they paying for painkillers or sedation out of their own pockets?I had a better time in childbirth mind you I was comfortably numb.
The stent causes irritation in the bladder so constantly using the loo every (15-30 mins) .This was explained to me but I thought I would be able to deal with it.
I think I may have made a really bad decision there is medication to help and I will try to get to GP with out wetting my self next week.
Because of this I'm missing out on a trip with my son and husband and I keep thinking what if it's the last one?
I just feel that everything you do to try and help yourself ends up causing more discomfort and you loose a little bit more independence

Were you awake for that?? I’m not a urologist (I’m a colorectal surgeon) no we don’t pay for pain killers ourselves, I can’t speak for your surgeon but I ask my anaesthetists to give an epidural for most of my procedures and I use an ungodly amount of local anaesthetic after suturing because I find that stitches are painful and don’t really work with pain killers.

I know from my training how they do uteric stents, and I would have prescribed codeine, paracetamol, ibuprofen and some liquid morphine(not much just enough to cover the weekend) because pain is horrible and really impacts recovery, healing and mental health.

Are you at home? If so can you call your chemo line and be honest and say that you need better pain management? They should be ok to prescribe you something asap because it’s about to be a weekend and you can’t be left in pain.

Sorry I wasn’t trying to sound condescending @Walkingnotrunning1

I was awake during all of it they gave a small amount of midazolam when I realised they hadn't giving me anything and asked . I had local anaesthetic and fentanyl and paracetamol when it clear that wasn't helping but at no point was I pain free.
I wasn't sent home with any pain relief but my GP did sort me out the pain is fine at the moment it just the constant trips to the loo that's getting me down.
I knew the drs weren't paying for the drugs I was just trying to bring some levity into my moaning rant!
I think the issue is that my oncology care and the urology care are done in different hospital trusts only 20 mins apart but it seems to prevent communication.
I wish you'd been my Dr you sound much more generous with the pain relief