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

What’s the slug treatment? Ointment?

@Whatevershallidowithmylife That looks sore. Are you on antibiotics- has it been swabbed. Sorry - hard to keep up with this thread!
@GoldenDog1 the appointments for pre checks are crap. My chemo is a Wednesday. Precheck can be Monday or Tuesday. Completely unpredictable
When I see a chemo nurse one week on a Tuesday they clearly think a Monday is better (but it’s not, the chemo doesn’t come up on time from pharmacy). Then there’s no appointments left on Monday, but booking doesn’t think to just go for first thing Tuesday. Then by the time I turn up for chemo on Wednesday there’s no Tuesday appointments and I go on a waiting list to get pre checked. It’s bloody annoying and stressful.

@SewingBees sorry to hear you have had a sore mouth.
I have had a disgusting taste in my mouth since chemo on Tuesday.
Even the mouthwash they give me hasn't helped this week.

@RedRosesPinkLilies those pre-check appointments sound disorganised and yes stressful.
I have to say, they are pretty good in my unit for the pre-check appointments.
They book mine in for the following Monday while I'm having my chemo on the Tuesday.

I just find it odd that closing on the next bank holiday Monday came out of the blue, as it isn't something they usually do.
My unit isn't the biggest so when they have to try and cram everyone in at the same time it can be an even more unpleasant experience than it usually is.
Anyway it's just a minor inconvenience having to go in next Friday instead.
At least I get to go in so I can have my treatment and I'm grateful for that.

It looks like it is going to be a beautiful day.
I'm itching to get the lawn mower out, but I have terrible fatigue this week and I'm feeling bloated and uncomfortable.
I'm hoping if I sit quietly by the window this morning and soak up some sunshine, I'll feel energised enough this afternoon to cut the grass.

I just can’t get off the rollercoaster. No never been swabbed, each new person who sees it hums and haws and tries something else. Currently on something containing manukau honey? My brain can’t contain anything but didn’t have any hallucinations during the night so i guess something they are changing is good. Well off for another nap. Needs must x

@Whatevershallidowithmylife have you seen a GP or other Dr
I have found nurses slow to use antibiotics
Surely a swab is a basic, easy thing to do
Ask for one. Repeatedly xx

@Whatevershallidowithmylifeagree with @RedRosesPinkLilies swab, diagnose and treat? How’s the bleeding? Xxxx

@EachandEveryone how are you today?
@GoldenDog1 I hope you manage to get out and cut your grass and the bloating goes soon x

@RedRosesPinkLilies how are you ? How’s chemo treating you?

Has anyone heard from herbal lately? She’ a disappeared off the radar.

Plodding on this end. Hoping this chemo does something.,else we are definitely abandoning this ship and boarding a new one!

Does anyone know how much more an MRI can show, compared to a CT? I’m now fretting that there’s more shit to hit the fan when mri is examined!

love to all @lucysmam @SewingBees @sellotapechickenhope you are all okay.
@Florsilvestredelcampo how are you feeling? X

Hi Enigma I'm very tired and I'm waiting to hear if I need to go in for a transfusion as apparently my blood count is low. How ever it might be a case that oncology will have different thresholds to the GP. I hope so I've booked to go and see Pink Floyd at Pompeii tonight . The film obviously I haven't invented a time machine 🤣

I have the last three swabs missing from my nurses. I don’t know where they go even my neighbour nearly fainted when she smelt it this morning.

im on my way to Mayfair to get my eyebrows done. I don’t know how I dare really I can hardly walk.

@Florsilvestredelcampo I hope you get to see the film! I must try and create some kind of “ other” life beyond blooming cancer! 🙈

@EachandEveryone you are brave.. are you sure you will okay venturing out. Are you going on the tube/ bus??

I’m here the sweat is dripping off me. I got the tube to green park it was the walking from there that was a challenge the roads! I am hungry though which is good for me so I might have to try and find somewhere to have a snack

i take it all the sweating is the immuno

How did it go @EachandEveryone? Eyebrows done?

Did the sun energise you @GoldenDog1 ?

@EachandEveryone did you get your snack?

I'm knackered @Enigma52 💤 Just cannot shake this bug thing! Not seen anything from Herbal in a good while now @HerbalRefreshment, hope you're doing ok?

@Florsilvestredelcampo enjoy the film!

Nothing new here - just cooking tea, then I'll shower & doom scroll for a bit before another early night 🙄. I can't even be arsed to pick up my book most evenings, I'm that tired!

I'm going in for a transfusion tomorrow before chemo it's going to be a long day but so much better than going in today and missing the film.

@lucysmam CBA this end too! Literally done precisely zero today! My excuse, chemo was yesterday! 🤷‍♀️

Heard nothing from my colleagues, zero, zilch, nowt. Maybe they think I’m dead??? So off sick I continue. What else can do?

@Florsilvestredelcampoenjoy the film, you deserve it c

hope everyone is ok. I feel absolutely shell shocked today. I had a genetics appointment via teams And stupidly thought because it was via teams it would be absolutely grand. Whereas I was told my melanoma (which is in remission with immunotherapy) is caused by a gene that is also associated with a 70% increase in risk for pancreatic cancer. I had clinic this week with my medical oncologist as well offering me radiotherapy on a spot on my hip which is the only spot of leiomyosarcoma they can see. I was incredibly fortunate that they did a massive surgery when they thought it was fibroids and I’ve had a total hysterectomy with ovaries and cervix included in the removal, because I’ve responded to the trabectedin chemo after having a massive reaction to the first one, my surgeon has offered me hipec which is where they’ll remove everything not ‘necessary’ (their words) ie could be bladder, part of the top of my vagina, omentum (it covers the organs) gallbladder, part of my liver, some bowel and appendix in an attempt to provide a cure, they’ll also pump in hot chemo for 1.5 hours and then drain it and sew me up. I do (used to do) this surgery. I know it’s a massive massive risk but apart from this spot on my hip which they think is spread I haven’t got any other spread so I am a candidate. I’ve got to go back for clinic on Monday in Macclesfield. I just feel overwhelmed. Like will they also take my pancreas at the same time to mitigate risk? Am I still a candidate for hipec with this gene mutation? I know I would be asking nice to tell me about funding if I was the surgeon, but I’m not. I know you can live without a pancreas, it’s obviously not ideal to be a t1 diabetic over night but if they’re doing so much already? Fuck my head is scrambled

Bloody hell @sellotapechickenthat’s a head fuck and a half!! All I can say is, leiomysarcoma ( I’ve discovered) is an arse of a cancer. I too had a full hysterectomy for the “ mistaken fibroid” Was told I was cured ( other than the metastic BC!). Yet, less than a year later, leiomysarcoma set up camp in my pelvis and has attached to my bowel, bladder, urethra ( fluid in kidney now!) and the top of my vagina. I would happily have EVERYTHING removed to be free of leiomysarcoma.

What are your immediate thoughts? Im
hoping, now you’ve said this, that The Christie can start getting shot of bits of me too! Doxorubicin isn’t doing much, Gemma-Tax is next if we don’t start seeing results soon.

What does your husband think?

He thinks I should have already booked in the surgery. He’s a judge and is very black & white. I know he’s right and I’m so sorry that you’re having a shitty time of it. I got put on the chemo I’m on because of my age which made me laugh because there is no fertility to preserve! That went in the bin last year! I think I will do it if nice agrees that with my shitty genes I’m still a candidate and maybe need a bigger op to remove the pancreas all together. You should ask about pelvic exenteration or hipec as an option. You have the right o ask and the Christie is one of 2 hospitals that do it. I know xx my team are struggling without me at the moment and I wondered (cynically) if they offered it to get me back to work before 2026! I had a meeting with my surgeon (colleague) and fuck me she has no bedside manner at all !! Her outcomes are incredible but she spoke to me like I was a nuisance. I know she’s got no ability to talk to colleagues so maybe it’s just that. When I was training she screamed at a scrub nurse to get out of theatre as she jangled the tray a bit too loudly. I just thought she’d be a bit less shit as a patient but She was shockingly bad!

My gut feeling is, have all the surgery. The less body parts lingering, the better! Trust me, if things get to crisis point, I will be asking all the questions and if no joy from Christie, will look at Oxford or London. I refuse to die from this!

Bedside manner? Hell, none of them in sarcoma clinic ( who I’ve seen anyway) have ANY bedside manner. Least of all that “ English or Urdu” doctor!

You have lots to think about. But I think if it were me, I would be saying yes to it all!

English or Urdu man needs reporting to PALS 100%! Get second opinions if you feel you need it! im so sad your experience of the Christie has been so utterly shite! I went to the village shop and bought 2 bottles of wine & 2 packets of chocolate digestives. Balanced 🤣

It should have been 3 bottles of wine and no biscuits! 🤣 I’m on the Prosecco tonight, despite sore mouth!

Will see how Christie goes, to be fair the 7th doctor i saw on Tuesday was quite nice ( although she spoke at the rate of lightening and I got lost when she mentioned gabapentin and MRI!) 🤣

🤣 you’re right! Fuck the biscuits! If you ever meet a lady called prof o’dwyer she has the bedside manner of a flea but she’s an incredible surgeon.

I’ve left some intense feedback about the sarcoma team recently! You can google the people you see and we’re all on the Christie website so you can report whoever it was if you wanted to!!

enjoy the prosecco !

Well Dr English Urdu will be getting some shite feedback, that’s a dead cert!! Twat!! 🤣

Suppose you could have dipped the biscuits in the wine!! 😆