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

[SewingBees]

New thread!

You didn't at all @sellotapechicken just caring x

I knew you weren’t being serious! I would expect a complaint if I’d sent a patient home with no pain relief so I would really consider raising it with pals. Pain is subjective so everyone needs to be listened to properly. I’m sorry you’ve had a shitty week though I really am x

I think this will be suggested to me too. My urethra isn’t happy with huge bloody tumour squashing it! God it’s all so unbelievable fucking unfair!

@sellotapechicken if I need this stent procedure, I’m requesting you. Your pain relief package sounds just the ticket!

Aw thank you!

You can 100% request adequate (to you) pain relief and say you want xyz written down and agreed to before you have the procedure and say you won’t agree to be discharged until you have appropriate pain relief. Pain is personal to the individual and no one can argue that you don’t need pain relief because they aren’t you and they arent experiencing your pain through the eyes of a cancer patient who already has decent pain management on board for day to day so of course you’ll need extra after a procedure. It enrages me how dismissive surgeons are about pain.

don’t get me started on only prescribing children calpol and Brufen! Ugh. Sorry rant over!

Hi - long time lurker, first time poster. I’ve had cancer since Feb 24 - became stage 4 Feb 25 & designated incurable about a month ago & told I’ve got 18 months or so. In a strange position as there are no treatment options bar surgery & (sticking plaster) radiotherapy so in between operations I’m fine. In fact the cancer hasn’t given me a moments pain just all the blasted side effects from radiotherapy. I’m about to start SABR with the hope of managing the inoperable tumour & then possibly palliative chemo in the new year but not sure there’s much point in palliative chemo when you have chemo resistant tumours.
Am here to scream into the abyss with you.

Hey @Sausagesforever welcome to the most friendly group no one wants to be part of. What cancer do you have if you don’t mind me asking. Would you like to join our Facebook group? We’re usually quite chatty on here, sadly we lost a very lovely member recently and it’s been a bit of a struggle since.

I think we need a new name for ‘non curable but treatable cancer’ palliative chemo sounds pointless but really they wouldn’t offer it if it wouldn’t make a difference, I hate the word palliative as people hear it and think either omg I’m dying or what’s the point just because it’s not curable doesn’t mean it’s not treatable and won’t help with symptoms.

Im a surgeon and I’m currently in talks with NICE about whether they should be more specific with their guidelines around stage 4 cancer. I applied for a role with them to sit on panels to mar decisions based around stage 4 cancer and I got the ‘job’ it’s only a couple of sittings per month but I feel like I have a good shot at making a difference, especially around stage 4 breast cancer.

@Enigma54 when my tumours were squashing my urethra they weren't able to place a stent and they put in a nephrostomy. That procedure was much more comfortable. I can't be 100% sure what pain relief was used but I think they were more on it. Also I was in hospital so the ward staff gave me oromorph as needed.
I think posting on here really helped me get things of my chest and as a result I had a much better sleep last night.Now for breakfast I'm finding it increasingly difficult to eat and I know the docs won't t be happy with my weight loss.

@Walkingnotrunning1have you tried these shakes ? When DH was really really unwell with glandular fever he had no appetite and was losing weight quite fast so we tried these as ensure drinks taste absolutely foul. Each shake is 500 calories and is nutritiously balanced. They also taste as they’re meant to taste!! https://uk.yfood.com/ you can get them in Tesco too

Hi, thanks for the welcome, please add me to the Facebook group - how do I go about letting you know my real name?
I have metastatic phyllodes sarcoma. Very rare, very aggressive, zero research. It just keeps marching on regardless of what you throw at it. My oncologist has said palliative chemo will buy me 3-6 months so it’s up to me if it’s worth it.

I’ll pm you

I’ve sent you a message, if you’re using the app you won’t be able to see it so just log in to mn on the desktop version and it’ll be there 🥰

Welcome @Sausagesforever Sorry you find yourself in this situation. It’s a pile of rubbish! But this is a lovely group and great to just have a good rant in.

I have leiomysarcoma in my pelvis, which is causing me alot of bother, pain wise at the moment. I’ve also metastic breast cancer to my lung. No idea how long I will carry on for, but it’s not looking good. Again, it just keeps marching on, whatever you throw at it.

@sellotapechicken I need to speak to supportive care at the Christie. They've prescribed buprenorphine patches, which make me feel spaced out and sick! Oxycodone and paracetamol aren’t too bad, but don’t offer long term pain relief. I may have to try the buprenorphine tablets again ( they made me sick!)

Yes I think I’m pretty close to needing a nephrostomy now, as my pain isn’t good. Did it take your pain away?

What is the procedure you’ve just had?

I hope you can eat something and gain a bit of weight xx

Absolutely have a chat with them that’s what they’re there for.

I know our lovely redroses got really good pain management from the hospice she was under. I wish so much that hospices were involved far earlier than they are now as they can really really help with pretty much everything plus they do alternative treatments like reiki and acupuncture and reflexology to help with symptoms. As it is in this country you hear the word hospice and immediately think of death

@Enigma54 life is a set of checks and balances isn't it ,even more so with our cancer care. The nephrostomy did take the pain away I wouldn't go as far as to say I was pain free but that was easily manageable with paracetamol . I did get a kidney infection and had to take naproxen.
I thought that the stent would offer me more freedom, I'd be able to have a bath go swimming etc I need to try to get used to it and if not try the medication that supposed to help
This last procedure is was a ureteric stent placement .
@sellotapechicken my son has a growth disorder so we have lots of information from dietitians about enriching foods and some really good recipes for nourishing drinks but I will look out for the other drinks.
Years of female conditioning about weight means I'd be lying if I didn't admit that I'm delighted to be in a size smaller jeans!, however illogical that is!

@EachandEveryone I hope your well and at home now x

haha yes I feel you on the last point! I lost lots of weight in 2024 though colitis caused by immunotherapy and I’m not going to lie that I don’t feel a lot better for it! It’s nice to be able to go into a shop and pick something up and try it on.

Although I was accused of using Mounjaro secretly by a busy body in the village and it did feel a little be satisfying to say nope just cancer treatment !

It's ridiculous how we're conditioned around our weight. Every time I look in the mirror I'm pissed off that cancer (meds) has caused weight gain, not loss.

When we didn’t know if my cancer was progressing or not, my husband would say “I’m sure it’s not, it’s not as if you’ve lost any weight”!

🤣 what are we like!

With a nephrostomy, can’t you have a bath? That would make me miserable couldn’t bath. Why is this all so difficult?

No you can’t have a bath because it’s directly into the kidneys and the risk of getting a kidney abscess / chronic infection is really high. You have to cover them with a dressing or a wrap so you can shower x

I had to check just in case I had denied my self this pleasure in error!

you cannot have a bath with a nephrostomy tube because it increases the risk of infection by submerging the insertion site in water. You can, however, take showers by protecting the site with a waterproof dressing

Arghhhh…. I want to scream!!
Feeling sooooo frustrated! 😩

Im going to find a homeopathic doctor for alternative pain relief. Is it homeopathic, naturopath, or herbalist? I get confused!