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

@RedRosesPinkLilies don't let these friends take away that positive feelings you had.
It IS positive.
As @sellotapechicken has said, these clinical trials can be incredible.

Those people who make comments like that just don't understand, how could they?
They really should be keeping such comments to themselves imho.

@RedRosesPinkLilies Also jumping in to say these weren't terrible results. I've been following the ASCO news over the last week, and clinical trials are truly amazing at they moment. So much progress! So fingers crossed that you'll have the right receptors for this one.
And see how you feel about the holiday the day before.

@Enigma53 My mum had a completely blocked ear a few weeks ago. Came out of nowhere. And it was... tadaaaaa... stupid, annoying ear wax. See if your local Specsavers have an audiology department that does ear syringing (I think that's what it's called). Ten minute job, sorted.

I have a weird lump on my scalp. Can't see it cause it's on the back of my head. DH says he can feel it, but can't see anything. Not red or anything. I just had a head MRI, so if this was a thing, they would have spotted it, right?

Thank you both

this is from chat gpt about the trial

MOv18 IgE Clinical Trial

Type: Experimental immunotherapy targeting folate receptor alpha (FRα), which your cancer expresses.

Pros:

• New mechanism: Works via immune activation — a novel IgE-based approach — which is very different from chemotherapy. If effective, it could be a valuable breakthrough.
• Targeted: It’s designed for cancers like yours with FRα expression.
• Potential for durable benefit: Immunotherapies sometimes lead to longer remissions in a small percentage of people, even if early data is still emerging.

Cons:

• Experimental: No guarantee of effectiveness; still in early phases, likely a Phase 1/2 trial.
• Unknowns: Long-term safety, side effects, and survival benefit are still being studied.
• Limited slots and strict eligibility: You may be screened and still not qualify.

So it is exciting. I know @sellotapechicken might be the only one that understands! Not sure I understand. But it’s the sort of thing that could be groundbreaking

Sent separately - so the science doesn’t put you off! @Enigma53 and anyone else - I’ve even asked chat GPT for come back lines to negative or minimising people. The app is a godsend for people without support in the real world

To the Negative Wallower:

• “I need to stay focused on hope. If you can’t support that, let’s talk about something else.”
• “I’ve already thought this through. I’m not looking for more opinions — just support.”
• “If you only want to focus on what could go wrong, I’ll need to step back. I’m protecting my energy.”

To the Glib Minimiser:

  Chemo once a week still affects every part of my week.”

• “It might sound simple, but it’s physically and emotionally draining. I need space to feel that.”
• “I’d love for it to be ‘not too bad’ — but it’s a lot. Please don’t downplay it.”

Tried to edit to make it clearer and it didn’t work

Chemi once a week affects every part of my week

Where there is breath, there is life.
Where there is life, there is hope.

”When you’re going through hell, keep on buggering on” ( Winston Churchill)

I’m losing it, the will to function. My brain has told me this bastard has got me. The oncologists aren’t hopeful. Euthanasia isn’t legal.. What does one do?

There Is a saying along the lines..I have my disease, my disease does not have me.
I’m not there yet, but I could be soon.
I think all I can say is that even if the end is approaching for you @Enigma53 you are still you and you still matter and are a person. I don’t know what gives you self value just now - but please pursue whatever helps you. None of us live forever, even those that are not currently unwell
Theres some ancient stoic perspective about -why would I worry about being dead, I didn’t worry about all the years that I didn’t exist.
I hope you can find anything that gives you solace just now. Much love xxx

do whatever you want and what you can. Get some pain relief that works and then just do whatever that makes you happy. Absolutely anything. I hope your partner has stepped up xxx

@Enigma53 I do hope you're feeling brighter, maybe? How is your ear now?

I've been thinking about "what does one do?" since you posted.

My answer is...one keeps the fuck on. Make a nuisance of yourself if the pain meds are wrong. Find out about the clinical trials. Say "fuck it" and spend the money on the stuff you enjoy. Do the stuff that makes you happy. Sod the boring stuff. It genuinely does not fucking matter! One does not let these thoughts in, please, you do still need something good in life, no matter how small and insignificant it seems to anyone else ❤️

@EachandEveryone hopefully you're one step closer to Glasto??

@lucysmam possibly a head cold in the making, I’m hoping so. My brain has said “ oh fuck, cancer of the ear” fuckity fuck!

Yep you are right, we just keep on don’t we because at that end of the day, what choice is there? All these aches and pains are just a constant reminder that the beast is there. I keep asking “ but how and why”? No one else at work has this, why do I?

@EachandEveryone how are you getting on?

@GoldenDog1 and @RedRosesPinkLiliesI will investigate ChatGPT. Maybe it will be more helpful than anyone IRL. I don’t really know what’s happened to my friends/acquaintances. So many have stepped away from me. I know I’m grumpy and can’t sustain small talk for more than an hour. I start feeling bitter and that’s probably because pain has kicked in again.

My colleague/ friend ( kind of) hasnt been in contact since 23 May. I messaged her yesterday to see if she could take me to a&e yesterday as I felt so ill. She said she was at a family lunch, but would take me and I felt SO bad.

im still in rehab I think they are sick of me. My thyroid level is up to 36 it should be less then 4. This is entirely because my thyroxine hasn’t been given separately to the rest of the drugs. From the first hospital three weeks ago I said it had to be on an empty stomach no one listened to me. Try having an empty stomach during the day in hospital. This morning I rang the bell at 5am and demanded it. One thing immunotherapy does is screw up your thyroid and I’m not going to help it.

i just want to get back to my flat now. I don’t know how I will get up the stairs but hey ho I will find away. The bits from the OT have arrived my cleaner said it is all second hand and filthy looking which has put me right off using them.

my ticket arrived I can’t walk on my own yet I have two weeks to learn. I am going!!!

@EachandEveryone what pain relief are you on now?

Hang on are you still on immunotherapy? As the meds you’re on can (and do regularly) cause hyperthyroidism (graves) but you need to be monitored because it can burn out your thyroid and cause hypothyroidism long term.

Yes we messaged each other today. He said I have to ask the doctors to increase my thyroxine. It might be a battle as they aren’t my regular doctors. I can’t wait to get home. I should never have declared my thyroxine and just kept it on me. Immunotherapy tomorrow on this site then home the day after. I’m not going home until I see the community support is there. That leaking hole in my groin is doing brilliantly with a stoma bag I hope the district nurses have stoma bags and don’t huff and puff.

Hi
Have now been told that I’m not eligible for the trial because I have ascites. To me this is nonsense since ascites occurs very frequently in people with ovarian cancer - and must be cutting down the number of people that can enter the trial

So more chemo. (Caelyx)
I have to have a heart scan first because it might damage my heart 🤣 and obviously I’m going to need a healthy heart for the remaining decades of my life. Think this is my second last option. After that it’s a tablet which is unlikely to work - cyclophosphamide

Perhaps on the positive side I have an appointment to get this ascites drained tomorrow. Although that’s not much fun either

Pile of 💩

How is everyone else? X

Well a nasty woman came in to my room and said I’m going home tomorrow straight after immunotherapy. Luckily my nurse was good and stood up for me so it’s Wednesday morning. I am terrified quite frankly.

Stitches came out of my final wound I look like Frankenstein I just have that horrible open one that needs dressing every day. I’m dreading getting it knocked at Glastonbury.

Ive given my cleaner £100 to carry on feeding the cats for the next week and just generally been around.

i am looking forward to my own bed and a bacon sandwich. I hope the home care is better than last time.

sorry to hear about my trial. My tsh was 35 and the doctor said I hadn’t been taking my morphine properly. As if it was my fault. He then admitted I hadn’t even been given the right dose the 100mcg and 50mg had been written separately!!!!!! So the nurses had just been giving me whatever they fancied instead of 150 and its had a massive effect on my levels. On my ward there would be an investigation.

@RedRosesPinkLiliesthat’s a bugger re: the trial. I mean does every patient need to be in A1 health, to get on a trial?
Glad you are getting the ascites drained, how long does that take? When does the new new chemo start?

@EachandEveryone are you sure Glastonbury is a good call? I mean what if the wound does get knocked? So Wednesday home then? Will you be okay?

Scan results for me tomorrow. I know they will be shite, so just want to know what the next treatment plan looks like. Also want a referral for a second opinion, Marsden and Oxford hopefully.
Also hoping for a procedure to relieve my bladder pressure as won’t be able to wee soon!!😱😱

A definite right royal pile of 💩

@RedRosesPinkLilies I’ve had a few of those heart scans for doxorubicin. It better not have fucked up my heart in the process of doing zero for me cancer! 😡

@Enigma53 - I know- you do wonder how they recruit for those trials.
i hope you get your second opinion and it’s useful

@RedRosesPinkLilies are your team consistent in their approach to your treatment and care? Do you see the same person each time?

Mine are totally inconsistent in their approach, hence the request for a second opinion!

I see the same oncologist- or one of his team. I think he does keep a tight grip on things. Today he phoned me, I thought he was on holiday - but actually he was in hospital himself waiting on an operation

I’ve seen around 8/9 medics since January!

She’s just asked me if I wanted oxycodin as I’ve refused it the past three nights. I’m furious I’ve never refused it. They put a 3 on the chart meaning I’d refused, I’m furious that’s two cock ups with that chart. Tramadol was what I refused as they prescribed me one tablet even I know on the box it says two tablets six hourly so one was never going to do anything.

yes I am so ready to go to Glastonbury I need to pretend this shit show isn’t happening to me. I want to be in that field shouting along with alanis morrissette by hook or by crook.