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

Crikey @sellotapechicken bet your head's a shed right now!

Bedside manner of a flea made me laugh. I seem to have been (mostly) lucky with who I've seen up to now!

@Okitsme how are you getting on?

That genuinely made me laugh 🤣🤣 I dipped the biscuits in melted Easter egg because I have adult money and can do shit like that 🤣

There’s a lot to take in on this thread tonight! Sorry - I probably won’t comment to everyone as I’m tired.
@Enigma53 chemo is doing its job. My ca125 is down to 103, having started at about 9800. I’ve had 15 treatments- so 9 to go
The steroids they give me for cover to prevent an allergic reaction screw with my sleep overnight (just the night of chemo) - so I didn’t sleep till 4am. And the dog woke me at 8am. I am knackered and it’s been a busy day.

Have been for acupuncture- does anyone else use that? Meant to boost my immune system- and I think it might be doing that. White cells have gone up after previous treatments. I don’t think it can be doing any harm and I usually fall asleep during it. Restful

@sellotapechicken you have a complicated life! Not helped by straddling professional person and patient. It does sound frustrating.
I think you probably need to go for the surgery too, although a lot to recover from. I suspect you won’t be happy unless you do all that you can to beat this thing.

Love to everyone. Sorry, I am tired, going to say bye for now (only till tomorrow) xx

Yes! Complete head fuck not gonna lie. I’m glad you’ve had good interactions. I feel like I’m protected from the absolute worst of bed side manner because I am their colleague and I have been for 7 years. They all know me which makes it easier and worse at the same time. They talk to me like a colleague when it’s my health and cancer on the line so there is precisely zero sugar coating which I appreciate but sometimes it would be nice to have!!!

As you have adult money, I hope it was posh melted Easter chocolate?! 🤣

I haven’t opened mine yet. My sister thinks I’m a snob because I don’t like Cadburys

eyebrows have turned out fab but god it was painful even with all the morphine onboard😀

I went to Pret had a prawn sandwich it was lovely. It’s weird how I want to eat when I’m outside of my flat but can only face weetabix when I’m inside.

Hotel chocolat 🤣

Not out of choice I can assure you! My dad appears to be the one who passed this gene to me and unfortunately he died when I was 12 so I can’t remember much.

@EachandEveryone what did you have done to your brows?

@sellotapechicken wow that is a lot to take in.
It's good that you are being offered this chance , but yes it must be a total head fuck.
I have heard of the whipple procedure but didn't know the entire pancreas can be removed.
You learn something new every day.

@Florsilvestredelcampo good luck with your transfusion tomorrow.
Enjoy the film.

@EachandEveryone hopefully the Manuka honey will be helpful.
When my surgical wound became infected and developed an abscess, it had to be operated on, leaving me with a nice crater, (that now looks like a bullet hole in my stomach).
They treated it with Manuka honey and it worked wonders.

@RedRosesPinkLilies I've never tried acupuncture although my reflexologist did recommend it.
I'm not entirely sure I'm comfortable with the thought of all those needles sticking out of me lol.

@lucysmam sadly no, I wasn't energised at all yesterday and spent most of the day napping on and off. I did get some washing out on the line though, so the day wasn't completely wasted.
I do feel less tired today but my stomach problems persist.
I currently feel like I have a tight band around the top of my stomach.
It's a milder feeling of one of my original symptoms and it is really setting off my anxiety.
I am going to go out and mow the lawn today though, no matter what.

Talking of second opinions...you know, I'm really good at advocating for myself but when it comes to asking for a second opinion, the words just won't come out of my mouth.
I feel like I really need a second opinion as nobody seems to be able to give me a straight answer when I ask questions.
The last time I posted about wanting to know about the tumour in my pancreas, a lovely lady sent me a private message about a certain mri they can do that would allow them to look into the pancreas better than a CT scan.
I asked my Oncologist about it and he said no, there is no need.
He said, if that tumour was bigger I wouldn't be here now.
The reality is, he's already told me the CT scans don't really show them what is going on with my pancreas or the blood vessels near my colon that my primary tumour has metastasized to.

I realise my hospital is very limited on the procedures and equipment they have, but I'm prepared to travel.
The way things are now, I feel very much in the dark at what is going on, yet I feel really awkward asking for a second opinion.

Hope you are all able to enjoy the lovely weather today. Xxx

@sellotapechicken - I know - it’s never through choice.
We’re offered a really difficult solution to our predicament- more poison/ more surgery, and all we can really say is ‘Thank you for the chance’
You’ll end up writing a book about this - a surgeons view of cancer. We all need a mention!

One of my GP ‘friends’ seems to think weekly chemo is easy. The burger to just hit her is getting stronger 🤣

I will assist with that urge if need be!!
Does “ friend” want to swap places with you?!? 😡

That’s it, our claim to fame!! @sellotapechicken once you’ve figured out what you want to do, the book begins! We will all contribute
( somehow!)
Title: “Confessions of a Christie Surgeon” 😆

I’m exhausted today after just one piddly after noon out. The nausea is just horrible. Here are my eyebrows I have to do the after care even the thought of that is draining me 😀

Oooh @EachandEveryone they are gorgeous!

Now in the hospice and i think that it will be really helpful. i’m hoping to be in a couple of weeks for respite, physio and doctors.
Don’t have the energy to mention everyone but gosh we’re all going through it just now- here’s the view from my room.

Leg woundsis the cancer metasising? is that the right word? Mouth issues quite new now require a sippy cup as can’t organise my mouth to keep the fluids going in from coming right back out again. Braw!

Send her a slap in the post in the form of a glitter bomb!!

And another one from me! 👋

@Whatevershallidowithmylife
sending big hugs 🥰 How are you feeling in yourself? Xx

I know this is a bit out there but did you guys know that look good feel better is open to any cancer patient? I thought it was just for breast cancer patients but it’s for anyone with a cancer diagnosis. It’s a really nice 2 hour class on how to do makeup when your skin is doing stupid shit during chemo or immunotherapy. You can do it online via zoom or a face to face class and you get a bag full of makeup afterwards, and it’s really nice brands like Charlotte tilbury, number 7, MAC etc, and if you do it online they post you the makeup kit it’s absolutely brilliant. I have always been shite at eye brows and now I don’t have any I’m ok at them 🤣 @RedRosesPinkLiliesim sorry if I sounded rude yesterday I was pissed off about everything and I shouldn’t have been so curt. Your ‘friend’ needs to have a glitter bomb.. for sure. It’s so glib to think that it’s all fine because it’s weekly! I like the idea of a book 🤣.

I think I’m pissing off my colleagues because I’m still trying to work non clinically so I’m seeing patients via zoom (not telling them anything bad at all, just going over treatment plans) and now I’m also a patient im so much more empathetic. I know that sounds awful but as a surgeon you’re always thinking about outcomes and who would be best for what surgery and being laser focused on that particular surgery and those patients that day, but now I’m a patient I feel like I’m seeing the bigger picture more and I always asked about family support because you have to ask but now I actually ask what support they have and try and support more holistically, I’ve already had some comments about how I’m being too touchy feely and the cancer nurses are there to do that and I agree but also I want my clinic patients to feel like they are cared about and supported and fully informed etc.

@sellotapechicken comments from colleagues?

One of my oncologist duo is more "touchy feely" than the other, she chats more generally, she listens better, it does genuinely feel like she cares (not that the other doesn't!). Honestly, seeing her is a much nicer experience - I know the NHS sees us as numbers & outcomes, but it doesn't feel like it with her. It's a bit sad it's being commented on really, it makes for a better experience with someone who at least appears to give a shit & not be ticking the "patient seen" box!

@Whatevershallidowithmylife I hope you get to enjoy some time in that outside space this week - the forecast is looking lovely!

@sellotapechicken my spinal surgeon is the only medical.professional who ever really asks how I am and properly listens to the answer. He always asks how I'm doing mentally and has tissues ready for when I inevitably burst into tears at the reality of what I'm facing.

I've never had much touchy feely stuff from any of the nurses I encounter, and now I'm stage 4 that doesn't seem to be many. In fact the breast care nurses were pretty terrible in various ways and I'm gla I don't have to interact with them now.

I say keep on doing what you're doing because the nurses may not in fact be doing what they're supposed to.

I’m ok folks but rainy here today so am inside days. Just two visitors today so doable. Might pop back on later but today over and out x

@sellotapechicken I will definitely be doing LGFB as I currently look a state! Doxorubicin has taken my head hair, nose hair, eyebrows, most lashes and public hair, it’s fucking awful! And if it carries on being shit at hammering this fucking sarcoma, the next treatment will be hair losing too, so no hair forever it seems! Yep seriously not happy 😡

I think once you’ve experienced a life changing “ experience” your mindset and way of thinking does alter somewhat. I watched London Ambulance this week ( I know it’s only TV) but it focused mainly on people with MH issues going through rough circumstances. All the paramedics had experienced some kind of poor MH at some point in their life and were able to completely empathise with these callers. They were hearing their stories and recognising them as human beings.

I don’t think it’s being “ touchy feely” I think it’s called humanity.