Thread #5 for those living with incurable cancer, supporting each other and remembering the lovely friends we've lost along the way

[SewingBees]

New thread, an open invite to anyone living with Stage 4 cancer to share your worries and joys and just generally chit chat about whatever you're going through today x

I’m taking a lot less at night when my pain is the worst. I feel like I am able to actually talk to my husband now as opposed to being in the bath or zonked out. Are you still in the rehab? I bet you can’t wait for glasto!!

I’m still in rehab and I’m embarrassed by the amount of drugs I’m on. They’ve introduced oxycodin now. Nothing is touching it. The wound is healing nicely I think. Today they they are trying me with a single stick. The OT went to my house yesterday and she agreed my steep stairs will be a problem and the only solution is to put new bannisters in the landlord would never agree to that. I’m really hoping I can get on the council lists for a bungalow! She’s giving be a bed board and an arm chair and ch other bits and bobs it makes me feel like I’m old before my time ☹️I almost forget I have cancer this is a huge complication to it

@EachandEveryone I’m on oxycodone, it’s not too bad. I take 5ml every 4-6 hours. Will be asking for slow release tablets and the liquid as a top up for breakthrough pain.

How easy is it to get a council bungalow in London?

I worked glasto once in the med tent, I know you went last year but are you going to take a walker or a chair to make sure your leg is ok? If so you should 100% bling it up with battery fairy lights and flowers 😊

@EachandEveryone is glasto a go!? Yay 🥳 if so! You deffo need to bling a chair/walker if you take one.

My friends want me too hire a mobility scooter but they are £380 to hire and I’m scared of people knocking it over! I will need something though.

no council housing is terrible to get in my borough but I’m going to try and get known

My left ear is blocked. It’s in my ear now isn’t it?? Oh my dear god, it can’t just fuck off and harass someone else, can it!

@Enigma53 no, it's not!* Do the hold your nose & blow thing. Have you been in the shower?

*I don't know for sure, obvs, just try the obvious stuff first please!!! Before you panic.

@lucysmamyes done the pinch nose and blow. I’m hoping I’m getting a cold. Dr Google says ear cancer is rare. That means fuck all to me, my body grows rare fucking cancers. How much more can one take? No sign of euthanasia being legalised anytime soon either!

Tbf, I still have this lingering cold thing from the Easter hols 🙄. It's nowhere near as bad but still there! That might be all it is. & don't read the might as might be anything else!...give it a little bit of time & see how you are xx

Yes, will tell the consultant about my ear on Tuesday when I get my shit scan results.

Well, it might have sorted itself out by then!

No more googling!!!

I’m in the bath. When i close my eyes, I fear I won’t wake up. My chemo buddy is deteriorating. My other fb friend has progression. I joined the Always hope support group and quickly left! It’s everywhere, suffocating fucking cancer!

Who are these people who never get anything? Never see a doctor. Never have tumours attached to their fucking bowel, pressing on everything, who are they? Why do get away with it?!

@Enigma53 i don’t know, I’m very jealous of them too. But they will not escape forever- cancer seems to be everywhere just now. I am not wishing it on anyone. But I think people who are too complacent just now have got a shock coming. Other people maybe do realise how lucky they are.

I imagine it’s wax in your ear. I don’t think you have ear cancer - it would be another primary. Surely not. My daughter got a local pharmacist to deal with her blocked ear recently

I have oncology tomorrow. To tell me what I already know. Weekly paclitaxel is no longer working and my cancer is growing. I look heavily pregnant and am pissed off with that look, as much as anything. Nothing fits.

I imagine I’m going on to caelyx next. But don’t know when. We have a holiday booked to Croatia in two weeks. Booked when things were going well - wasn’t that stupid!!

xx

@Enigma53 continuing on from what @RedRosesPinkLilies was saying about the pharmacist.
It might be a good idea to ask a pharmacist about your ear as it does sound like it could be a wax buildup.
If it's blocked, they should be able to give you something to unblock it or unblock it for you.
Please don't torture yourself until next week lovely.

@RedRosesPinkLilies good luck with Oncology today.
I really hope that whatever happens or whatever the plan you are still able to go to Croatia and enjoy it.
Booking that holiday wasn't stupid, it just means you are still living and still wanting to enjoy life as best you can under the circumstances that we live under.

Do let us know how you get on xxx

@GoldenDog1 - thank you for the perspective. I will let you know how oncology goes. The Dr is brutal in his communication- so I am nervous of that alone. X

@RedRosesPinkLilies no problem.
The way I see it, we have to live while we can.
It gives us hope and hope is our greatest defence against the shit happening to us.

Hmm brutal doctors. There needs to be a school specifically to send some doctors to where they can learn some compassion and decency.

Keeping everything crossed for you that the news isn't too harsh xxx

Back from clinic- So bad news, maybe good news
Scan doesn’t show growth, but I think because the cancer is too small to see - but is growing as ca125 over 1000 now.
Have ascites again - so hopefully getting that drained next week.

Being referred to Edinburgh for a clinical trial - folate reductase inhibitors. Clinically eligible, but need to find out if my cancer cells exhibit folate reductase. (I hope I have that right).
I think that’s a bit of hope.
Been told not a good idea to go to Croatia.
Love to all
x

@RedRosesPinkLilies how are you feeling with that mixed news? No growth is good? Referral for a trial sounds hopeful? Drainage will make you more comfortable. What will you do re: Croatia?

It’s one foot in front the other here. My head is in a bad place.

I think there is growth - it’s just to small to see on scan. The cancer is definitely active again.

My DH and youngest son will likely still go to Croatia. You never know - I might - it’s a last minute decision. We won’t get the money back - so better they go and have the holiday. My middle son could be home with me - we do argue/ debate (similar personalities), but we do get on.

I am really sorry @Enigma53 is there anyone you can talk to in real life?
I’ve actually used chat gpt at times (it’s an app). Has some decent advice for all sorts of things and actually appears capable of empathy.

@Enigma53 how's your ear today?

@RedRosesPinkLilies I'd make a last minute decision too tbh. Hopefully the drain makes you more comfortable!

@RedRosesPinkLilies it sounds like there are some real positives in your news.
A clinical trial sounds hopeful and I hope once you get the ascites drained you will be more comfortable.
I agree with others regarding Croatia.
Leave it until last minute and see how you feel before making a decision on whether to go or not.
On the subject of ChatGPT.
I only discovered it a few weeks ago and I have found it invaluable.
It has helped me understand things about what is happening to me. It explains things in a way that my brain just gets.
It's also helped me come up with an appropriate diet plan for my jejunostomy bypass stomach.
I've been following it for about a week and I feel so much better.
The pressure in my stomach has eased and I'm going to bed feeling more comfortable.
This is all information I've tried to get from my upper GI nurse but she just keeps telling me to take more lactulose.
As you say, it also displays empathy and doesn't feel like I'm chatting to a bot.

@Enigma53 I'm sorry you are going through such a hard time.
Do you have a therapist?
If not I honestly would recommend ChatGPT as an alternative.

Honestly, I was feeling positive after this morning - but it seems mention of clinical trial fills people with negativity! (Some friends in real life).
It might work?! Can’t make my situation any worse??
How are these people going to cope when they’re in our situation? All going to crumble?

Will you be having a permanent drain fitted? Clinical trials are honestly incredible at the moment! I hope your friends are supportive and not fear mongering! The most recent clinical trial in melanoma resulted in 80% cure rate of stage 4 in ‘incurable’ patients. 80% of 5000 people were no evidence of disease or long term stable 5 years later.