Stage 4 cancer... ? incurable? Thread #2 is here. In memory of our inspiring, lovely mowly77

[Tilllly]

New thread
All welcome, reluctantly

Bugger off pain for @Tilllly and @HerbalRefreshmentt

I'll think of you tomorrow @GoldenDog1 I'm going up to my local hospital for 3 more blood transfusions as my hb level is low again. It's been a week of lying around waiting for a blood test that accidentally got put on a routine list not an urgent. Happy days.

@WrenNatsworthy
That is really not good about your blood test being put on the wrong list. My goodness I get everyone is human and mistakes are made but I'm reading about too many mistakes and it's just not acceptable.
I hope you are not at the hospital too long.

I'm dreading my appointment with the Oncologist today.
Although I question everything I still feel really awkward when I do.
The constant chasing appointments & having to question everything because it has either not been explained properly or they've got it wrong is making me mentally fatigued. I'm so fed up with it.

@Tilllly @HerbalRefreshmentt I hope you are both ok xxx

@GoldenDog1 and @WrenNatsworthy seriously, is there something in the water lately (given the waste water dumping scandals probably, but thats a different issue) to be causing all these minor (and major) misunderstandings and errors? And the stress and anxiety and extra thinking/steps/admin it generates - GD has it right. I mean you agreed to a plan and then he up and changes it cause why and then doesn't communicate it back. Yet we are all supposed to be mindfully breathing and reducing stress as much as possible and trusting in the process and our consultants. Let's start with the medical complex in the first place causing a bunch of that stress before we start hyperventilating ourselves.

My discussion yesterday was solid and now we have an agreed plan (ha! see above) however, and going back to this error point, apparently there is a tendon avulsion in my hip (the tendon tearing away from the pelvis) as noticed in the January scan but not the October one. Oh rly? So after I went and got a different hip doctor involved and made an unholy ruckus in the treatment room the other week NOW you find a tear? But my leg hasn't worked properly since last May and has been deformed since last summer (dent at the top of my quad), and every scan I asked - is there a tear reported anywhere? I sure hope a second read has been requested for the last five or six scans though, because thats just straight up sloppy. Anyway, we seem to be pulling in the right direction... finally.

Best wishes and luck for today GoldenDog!

@Tilllly How are you feeling now? CT scan done? Keeping my fingers and everything else crossed for you. Dog pics are fab, kept them coming when you can.

@WrenNatsworthy Good luck with the transfusion today, I hope there are no issues.

@HerbalRefreshmentt That’s incompetency taken to a new level! How they could have missed the tear??? And to think that doctors are there to make us feel better/prolong our lives yet the sloppiness continues… Awful. At least there’s a plan, hopefully without any sloppiness, so that’s a win. But yes, the hoops we have to go through when we are already wrecked with living with stage IV, mental fatigue is unreal.

@GoldenDog1 What a piss show! I hope you get to the bottom of this fiasco today. Gearing yourself up for chemo and then being told you are not getting it is the pits. It’s no skin off the oncologist’s nose as it’s just an administrative blip for them but for us it’s a fucking big deal that should never have happened. Fingers crossed for today.

I am in the throes of nab Paclitaxel side effects-they seem to come on 4-5 days after the treatment. Peripheral neuropathy has been out of this world, alongside fatigue. This morning I am feeling slightly better but sweet Jesus! Gabapentin kind of takes the edge off it but it’s not as effective I thought it was going to be. DS has had an inordinate amount of screen time for the past 48 hours but I was just too incapacitated to be out of bed. I did manage to help him with his homework on Sunday afternoon but that was about it. Feeling immensely guilty but that’s the reality of being a single parent with stage IV and no family nearby to just pop in. A friend came yesterday morning with some fruit but they couldn’t stay on because they are working. It’s so hard mentally as well as I have no idea if I am going through all this suffering how the treatment is working. And not having an end date is also psychologically tough. If it works I have to be prepared to put up with it indefinitely. And if it doesn’t I will be tossing all my pots & pans out of the window screaming in frustration. It’s shit and it takes every ounce of my mental fibre to keep myself going. I keep looking at my DS thinking this is the reason why I keep going.

I am still in, I keep trying to message, but the signal is rubbish
The scan show that the cancer has spread to my bones. There is a large one in the chest and two on the spine and various other ones.
The pain is not the horrific screaming agony of the weekend, but it’s still not quite under control. About three weeks ago, my oncologist doubled both morphines, since I’ve been in they had me on the old dose… so I came in in a lot of pain and was basically being given half the medication I was having at home

I’m now on 30 mg twice a day zomorph, IV paracetamol, and up to 6 doses of 5 mL oramorph. I’m still getting the spasms, particularly in my back. The spasming pains are worse than the ongoing pain, they come out of nowhere and ambush me.

The lung nurse has been as well as Acute Oncology and the palliative care nurse. It was like having an army of avenging Angels coming to my rescue. So for a start, we’re going to see how this pain regime goes, and if the pain is managed, then I can go home ahead of seeing the palliative care consultant next week

I see the oncologist on Thursday. There is a suggestion that I can have radiotherapy to get the bone mets but I will know more when I’ve seen him.

The scan from before that showed an increase in the lymph nodes, is still fairly inconclusive, so I don’t know yet if they consider the Chemo is working and will continue. Or if the increased lymph node means it is not working and the chemo will stop
So two different things going on really

My nurse today has been really good with bringing the pain meds on time, I think the ward sister designated her specifically. I gather that the issues with all the delays and errors has been documented and is been raised. I don’t know if it will do any good, I hope so. There is something horrific about leaving your patient screaming in agony. If you can do that you are definitely not cut out to be in the medical profession.
I want to go home, but at the same time, I am frightened about being ambushed by the pain again

I'm glad it's finally under control, I totally get the being scared to go home, you're going through the bastard cancer mill dear @Tilllly .

I am home, 3 bags of donated blood heavier, thank you kind strangers. I feel ok but scared to overdo it. Will see how I am tomorrow. Oncologist calling at 9.30am to discuss things. No idea what they will say.

@balkanscot you are fucking marvellous.

Too tired to post anything very coherent as zoning in and out of consciousness! Just tired from a hospital day, but got a good long walk in and some shopping. Chemo tomorrow and a nice fat needle stuck in my port all ready. Junior onc today very nice, another Irish one, was very empathetic and wanting to investigate things and maybe try new treatments. So we will see. Still very gobsmacked by my sudden mets and symptoms therefrom (possibly not the most sensible word but I really am hardly conscious)

@WrenNatsworthy Am picturing you perhaps unfairly as large happy vampire glutted with blood and gnashing your fangs, so glad you have got it though :D Best of luck with the onc talk

@balkanscot You sound to be hanging on and keeping going for your DS so brilliantly but it must be unimaginably hard, hugs to you.

@GoldenDog1 @HerbalRefreshmentt It's at the point where I'm afraid to scratch my nose in case they cancel my chemo till they find out what's making my nose itchy!

@Tilllly Spasming pain is so horrible, you can't move or do anything. Except yell I guess. Crazy that they had you on half the dose you'd been on before and left you in agony, so very very bad :( Hope something comes of having it documented. Your Angels sound wonderful though, I'm so glad someone is on your side. I do so wish you could go home but can see how you'd worry the pain would be back. Hope you can continue with chemo and/or get radiation and most of all that your pain is so well-controlled that you can be safely and happily at home.

@Tilllly wow I can't believe they had you on only half the pain meds. I hope the errors and delays go somewhere and they take more care surrounding these issues.
I hope you get home soon with the right pain meds xxx

@WrenNatsworthy I would say after your transfusion you deserve to put your feet up and take it easy.

@balkanscot sending you lots of hugs. It sounds like you are doing amazing for your son. I hope you feel a bit better today.

@HerbalRefreshmentt thank you for the kind words.
I'm glad you now have a plan in place but my goodness what a mess.
I want to say it's shocking but from my own experiences and reading on here the errors are not shocking at all sadly.

I had my appointment yesterday morning with my Oncologist. He was trying to explain cycles to me but it made no sense. When I pointed out what he was saying meant I would be getting less treatment this month he paused, thought about it and agreed I should have my chemo this week after all.
It's like they over complicate things that don't need to be complicated.
I'm now having it on Thursday.
It's a bit of a pain as this means my day will now change to Thursdays so that means I'll have to cancel and rearrange other things.
I will ask if I can go back to Tuesdays after my week off. I would rather just get it done at the beginning of the week but more importantly as my Oncologist only comes to my hospital once a week on a Tuesday it's handy for me to have my chemo on that day as then if I need to ask him anything I know he's there on the unit.
A couple of weeks ago I asked my specialist nurse if there are any clinical trials and was told there are none for my cancer.
However I decided to look myself and found at least two I might be eligible for.
I've asked my Oncologist if he can take a look and see what he thinks. He's agreed and said if he thinks any of them are suitable he'll make a referral.

I had a work review yesterday so after my appointment I nipped down to my own department and ended up spending a few hours with my colleagues.
It was lovely and sad at the same time.
We had a right good laugh and the doctors kept popping into the office to see me and to give me hugs. Some of the stuff they come out with really make me laugh such as "don't take any notice of what they tell you about your prognosis because what do they know?".
I just find it amusing coming from doctors 😀
It was sad too though as I miss the banter and the routine.

On a negative note I've been feeling off since I got home yesterday with extreme tiredness, feeling nauseous and an uncomfortable feeling in my stomach.
I was told after surgery I may have to go back to have a stent put in to widen the gap where they created an opening during my stomach bypass.
I'm hoping this is not what is happening or that it's anything to do with the stomach tumour getting bigger and it's just because I've over done things the past couple of days.

Wishing you all a good day today xxx

Sorry for the long post.

Hope you're feeling a little better now @GoldenDog1 . I definitely think 'don't believe the prognosis' is great advice!

Hello @LuciaPillson is the world still spinning lovely? Must be all the rum.

Birmingham Onc called this morning, he's trying to co-ordinate care with local hospital- scans to investigate the cause of the anaemia. I'm pinker than I have been in weeks, let's hope it lasts! Still unable to do a great deal but so much better than before the transfusion.

@GoldenDog1 Oh well done being firm on how much chemo you're getting, getting your schedule how you want it and advocating for trials. It's so tiring having to micromanage everything ourselves and hard to muster the mental energy.

I hope your stomach symptoms are not serious and they resolve soon. I have some nausea/discomfort now but I can tell that some of it is related to one of my chemo drugs. The lower abdo symptoms I think are due to my new and improved cancer though.

@WrenNatsworthy So glad you are pinker :) Well something's spinning! I've eaten very little today, mostly junky snacks, and feel a bit off in the stomach from chemo so don't feel very motivated to prepare food. But if you find yourself floating outside people's windows with the urge to bite, it may be time for another transfusion.

@LuciaPillson you mean cow!
"New and improved cancer" made me laugh out loud, which hurt my chest and woke up Yumyum 🐈‍⬛ and Daisy 🐕 🤣🤣🤣🤣

New and improved... just think you only had old and inferior before!

@WrenNatsworthy being a little Pinker than you were is good.
I'm really glad you are feeling better than you were xxx

@LuciaPillson yes I think advocating for myself is the only way because nobody else seems to want to do it for me.
You are right though, it is tiring and makes me feel weary.
I love how you describe your "new and improved cancer" 😀

I do feel a bit better today.
I spent yesterday doing absolutely nothing and it has really helped.
I have some stomach discomfort but it's not as bad as it was.
I have stomach problems anyway because that's where my primary cancer is plus the stomach bypass a couple of months ago but the other day it was particularly bad.

Anyway it's my new chemo day today so hopefully won't get too many side effects.
I'm going straight in to ask them to email my Oncologist to see if I can go back to Tuesday's (this will all be dependent on my scan results anyway).
I bet they are fed up with me on the unit always asking questions and questioning everything.

@GoldenDog1 Oh glad to hear of another (reluctant) micromanager.

I insist like a maniac for chemo on Wednesdays (and same week as onc on Tuesday morning). Half my chemo is a 'takeaway,' sadly not the tasty kind, fecking little bottle attached to my port that I carry round/sleep with for 2 days, and the homecare nurse can then disconnect me on a Friday without getting into the weekend which is more complicated. Then mornings! I must have mornings! Because I don't eat on appointment days because if I do ostomy will pour diarrhea (sorry) on everyone and everything. So afternoon appts mean not eating all fecking day, though I might have a very tiny early breakfast and then pray it all settles down by afternoon. Anyway am constantly nagging and whinging about these things.... want to say to them 'it's not that I enjoy shouting at you but you leave me no choice....'

@Tilllly I am a mean fucking cow and glad that someone is finally acknowledging it. Sounds like you've got new and improved as well, aren't we lucky? The cancer conglomerate working tirelessly on our behalf coming out with new products in a range of flavours: bone! ovary! It's like a lovely big supermarket only oddly all products are carcinogenic, not all that unlike an ordinary supermarket to be fair.

Oooooh if disturbing animals it means.... you are home??? With the Beasts!!!! Hooray! Would dance around room but no energy so am slumped bleary eyed in front of monitor (which cannot spell on first go) with usual resting mean fucking cow face. But happy inside. xox

@GoldenDog1

You ask as many questions as you want. I take a notebook with me, and write down my questions and the answers. You are accessing a service and questions are good.

@LuciaPillson STOP MAKING ME LAUGH!!

Yes, sorry - I came home last night. I'm so happy that I slept for four hours in a row.

I am not pain-free this morning but I can move and it's definitely definitely much better

@LuciaPillson oh I remember the little take away bottle very well from the previous chemo I was on although mine was for a 24 hour period. I never had it disconnected at home though but instead had to go back to the hospital to have it taken off.
That was fine by me as I was just glad to get rid of the little 🤬

@Tilllly a notebook is a very good idea as I have so much brain fog I forget half the things I want to ask.
Yay you are home. Hope you can get some relief from the pain ASAP.

Definitely @GoldenDog1

You have so many appointments and meet so many different people, phone calls etc etc. I got one of the Pukka pads, with three inserts in, so I've got space to tuck things into, and also can use it for different areas of the treatment

I also did a list of all my meds and printed a few out, and keep it in one of the inserts, so when they ask any questions I can just hand that over. I've had several comments from doctors the last few days, when I've done that, it's made their life a lot easier and it prevents any errors.

Thanks @Tilllly all great ideas that I'm going to put into place.

@Tilllly hooray for being home! I love that your cat's name is YumYum (like the pastry?), is it a nurse cat like Brenda was for Mowly, or my Midge is for me? Although lately Midge's 'nursing' has come down to wiggling me almost out of the bed by 5 am while she takes up most of the real estate getting her old fat ass comfortable,but she makes sure to leave a gentle paw on my arm at all times. I guess that means Im doing ok as in January when I was a disaster she was in every night and curled up against the pillows.

I was going to say - see if you can get some of those fast acting Fentanyl under the tongue lozenges - I finally saw understood the benefit last night during my nightly 3am pelvic bone pain jamboree. It was just enough time to calm me down and get the oxy started, so definitely only use when necessary! But it sounds like you are at that point anyway. I hope you can hang on at home and not have to go back any time soon.

@GoldenDog1 and @LuciaPillson and all the other ladies - sometimes you just have to LOSE IT to get attention. I try not to target anyone specifically in my ranting, but apparently I wasn't complaining enough/loudly enough so when I finally did it was a Whoa moment. But if you don't ride these folks who will? Same with regards finding clinical trials for you there GD. I get everyone is stretched but surely for those of us in Stage IV land where we DONT fit neatly into treatment boxes, a bit of leg work on their end wouldnt go amiss. It worries me when I see earlier stage ladies happy to go with the flow on the conveyor belt of treatment, confident in 'oh, consultant knows best!' and its like yo, no. You gotta get engaged no matter how much you dont want to. At the very least know which drugs you are on why and their purpose, but even that seems to be too much.

I also started carrying a list of my drugs, dosage, frequencies because its blown up into something massive while at the same time my brain fog has increased. I dont know how come, when they send me clinic letters and the GP clinic letters, why there isn't some sort of copy paste function in these whiz bang Epic systems? I hate having to meet a new doctor because I have to go through the whole song and dance of a) whats happened since 2019 and b) drugs. I have my questions notebook but I think that may not be enough anymore, shall investigate a Pukka with pockets.

I'm lucky in that my hospital, part of a small group actually, has an online record of all patient health issues, appts, treatments, meds etc that everyone can refer to, so I never have to make med lists for eg. Mind you no-one goes in and cleans up the lists so I report stuff and it doesn't leave, or doesn't get put on the list but sits at the bottom. I think they didn't realise when they set it up that no-one was going to volunteer to do that admin.

@HerbalRefreshmentt the thing that annoyed me the most about the clinical trials is that I actually asked my specialist nurse if there was any and she immediately said no.
I now know through looking myself that there is. Now I understand I may not be a suitable candidate but she could have at least checked.

I was lucky enough to get one of my favourite nurses today looking after me during my chemo so I asked about moving back to a Tuesday morning after my week off. She emailed my Oncologist there and then and
said she can't see any reason why it would be a problem (again this all depends on my scan results and if I'm staying on the same treatment).

I'm feeling a bit rubbish tonight after the chemo so it will be an early night for me.

Hope you are all doing ok this evening xx

I've seen the oncologist today

The bone cancer is moving very fast, I already have a fractured rib from one tumour. (No wonder it bloody hurt!) He describes it as a significant setback as the cancer is uncontrolled in several areas

The chemo and immunotherapy are not working, so will stop. (I thought with the lymph nodes only changing in a tiny way, the chemo would continue. And I also thought the mention of radiotherapy was to treat the bone cancer, but it's for pain relief)

The last line of defence is a new tablet called sotorasib, which targets the “Death Star” mutation I have and can slow it down but by a few months at best.

The focus now is on pain relief and the amitriptyline is, I think working - I see the consultant at the hospice in a few days to review the pain plan and confirm my DNR.

This was not the plan at all

You guys are such warriors. I’m here by chance but my god, I’ve read these and previous posts and honestly.. I’m honoured to even of read some of your journeys. ❤️

Oh fuck @Tilllly that's utterly, utterly shit.

@Tilllly I'm so so sorry to read your update. Not the plan at all ♥️