New year, new thread - cancer support thread 68 - join us if you have cancer, or are waiting for cancer-related tests

[WhatWouldLeslieKnopeDo]

Hello everyone,

Welcome to the new thread. Our previous one is here.

Anyone with any cancer is welcome, or anyone waiting for tests because they might have cancer. If you're new, just jump in wherever. Don't feel you need to catch up with previous posts. We talk a lot! Ask any questions you need to. Someone will hopefully have an answer. And feel free to post photos of cute pets too.

Whether you're new or not, it's helpful to post a little introduction on the new thread to save people trying to remember everyone's different diagnosis and treatment.

Hi, I've done a name change but i knew the list was about the time I had my appt.

Leslie wrote it, do I've just copied it to here.

Hand cream
Lip balm
Wet wipes
Hand sanitiser (at my hospital this is always at the end of the bed so difficult to get to if you're the actual patient!)
Tissues
Deodorant
Toothbrush, toothpaste, mouthwash (travel size ones if possible!)
Extra long phone charger
Squash/cordial to make the hospital water drinkable!
Ear plugs
Eye mask
Book/kindle/tablet/whatever entertainment you fancy
Headphones
Sweets/snacks
Nighties/pyjamas
Knickers
Any medication you're on (also handy to have a list of this to give to doctors)
Glasses if you wear them
Notebook and pen to write down questions/notes for HCPs - write down everything they say as you'll be woozy from the drugs and probably will forget however much you think you won't!

Hope all goes well for @KeepCalm and @Pandora. Good luck to @Tahiti too. In addition to the hospital packing list, I take a high capacity power bank - sometimes it's easier to charge from it, especially if the plug sockets within reach are in use - and prunes/apricots which help if you've had codeine or other constipating drugs. Noise cancelling headphones are my number one essential though. After I had my mx there was a woman on the ward who wouldn't switch her phone to silent... Endless pings as she received message after message. She was only in for a broken finger as well!

Purple, good news that you found the escape route! Hope you get home tomorrow as planned.

Anyhoos. I hope everyone is doing ok today. I've had a CT scan and a bone scan, so just waiting for the results. I had a bit of an internal meltdown when they did an additional bone scan on my ribs - was it because they were looking for something as that's where the pain is, and couldn't see it on the full scan or they saw something on the big scan and went back for more? I convinced myself the radiologist did a wee sad face as well. Cancer never stops being a headfuck does it?

I've started Yoga with Adriene. The cat freaks out! Don't know if it's the mat, the yoga socks or the fact that he's not used to me exercising! At least I know my stomach muscles are not non-existent because they're blimmin sore after attempting planks!

Another reminder for anyone looking for small cushions - Jen's Friends are a fab wee charity who provide heartshaped mastectomy pillows. They're perfect and only a few pounds for postage. When I had my PICC, I used tubigrip mostly. The hospital gave me waterproof covers for the bath/shower, but they were pretty useless! I would have a bath with my arm dangling over the side mostly :)

Oh flippy I bet you did have an internal meltdown. I would have done too.... Fingers crossed the wait to find out is not too long now. I'm sure you have misread the face of the radiologist (or perhaps they were trying to show empathy that you were being scanned so much?)

I am due a CT next week prior to radiotherapy starting and am already worrying they will see something sinister (I don't think there is any expectation there will be anything, this is just me having scanxiety!)

I cannot remember who asked about picc covers, but mine was from Bold Beanies and I loved it as it felt a lot less medical than a tubi grip.

Flippy just nipping on to sympathise** about the anxiety of further symptoms and investigations. Wishing you some swift answers to your tests.

Am going through similar (having had treatment for breast cancer last year) and this thread has been a godsend as I haven't shared my worries about this in rl with anyone other than my dh, who has a number of stresses of his own to deal with at the moment.

Sending and to the rest of the lacies.

flippy I had a sad face from the normally cheer radiologist today after my PET scan. I’m the queen of interpreting waaaay too much into their facial expressions. Also into whether they say “do you have an appointment to get the results” or “do you have an appointment SOON to get the results”

None of my predictions have ever come right!

Hello everyone

I will catch up with all of your posts in a minute.

I have some very sad news. One of our lacies, MiriAmmerman, died earlier this week. Her wife was with her when she died. She has a thread here if you'd like to post condolences. I have her wife's permission to share this news here, and she asked that I tell everyone that Miri was brave and dignified right until her death.

They also had a little boy, who is now nine months old.

Rest in peace Miri

Just realised that the probably looks wildly inappropriate I thought it might be fitting as it's our lacies "symbol"

Rest in peace Miri.

Leslie, I'm sure Miri would appreciate the . Her light will forever more be shining and glittery.

I hope the wheels are in motion ready for your great escape tomorrow purple

Thinking of KeepCalm and Pandora today - especially hoping that KeepCalm managed to get everything packed in time!

Flippy hopefully they're being extra thorough because that's where you said you had pain do you know when you'll get the results?

Rosiesmummy I hope the junior doctor is able to help. They can't be completely useless or they wouldn't be allowed to see patients without supervision

Tahiti good luck. Will you be in isolation or will you be able to have visitors?

noodles sorry the littlies are still poorly. Good you've got a date and a plan for the next stage.

Waving to peapod and everyone else :)

Very sad news indeed. Remembering Miri and our other Lacies.

Noodles, namechange, peapod and Leslie - thank you for sympathising with my paranoid hopefully misinterpretations of scans. Waiting never gets easier. I expect to hear something by early next week.

Noodles. Whilst I hope I won’t have the drains in for 16 days (that must have been frustrating!), I’d rather they weren’t taken out prematurely as apparently then you can get fluid build up which has to be aspirated in A&E which doesn’t sound like fun.

The district nurse did come and change one of the bottles today as it was getting quite full and heavy to carry.

Oh what a rollercoaster. Came into hospital for a sigmoidoscopy to check out the area in my bowel which had shown up in the PET scan. A preliminary review this week hadn’t shown anything so all very relaxed going in - told it would take about a minute, so no sedation, had lunch as normal etc.

Turns out there was a large polyp that had to be removed and which then bled a lot, so much more involved and uncomfortable than I expected, and they now want to observe me for a couple of hours and keep me nil by mouth.

Am in shock I think, and also really worried this means the melanoma has spread. Another wait for results while they check out the polyp.

Hope keepcalm and pandora have got on OK today.

purple - fingers crossed for your escape tomorrow!

Too farout

Can understand why you feel in shock. It’s sometimes hard enough dealing with the expected things that happen in hospital never mind the unexpected. Hope the results are fine.

Thinking of Keep Calm and Pandora too.

Has anyone spoken to you about it Toofarout? It'll be a while before they have the lab results, but they ought to be able to give you a vague indication of what they think is going on. Polyps are very common. But obviously that's not reassuring when yours was found under these circumstances. I'm sorry you've had such an ordeal and I hope you are recovering well

Waving to all.

flippy I had exactly the same with my bone scan two years ago... literally going back to look at my rib area... which hurt me at the time too. And I could have sworn I got a sad face from the radiologist and even a little negative looking shake of his head... with pity!!. It was CLEAR and as soon as I heard that the pain went never to return...
Cancer is such a head fuck!!
While I'm on... love and best wishes to all...and very sorry to hear about Miri

Such sad news about Miri
Thanks for letting us know Leslie

Hi lesley the consultant said his preliminary view was it looked ok (but given his previous predictions have proved wildly inaccurate that’s not as much comfort as it might be!). He was so confident the flexible sigmoidoscopy would (in his words) “draw a line under your rectum” it feels a bigger knock back. Hey ho, I’ve had coffee and biscuits and am on my way home, so things are looking up!

I was so sad to read the thread about Miri. I remember her on here. XXX

Leslie I can have healthy visitors for now, but that may change apparently! I'm in hospital already. Wasn't due in until tomorrow but they rang earlier and asked me to come in straight away, to secure myself a bed probably! How are you today?

Toofar hope you're managing to not worry too much. Fingers crossed the results show no spread.

Have we heard from the lacies in surgery today? Keepcalm Pandora

Namechange You made me laugh with second guessing the radiographers! At my last PET, the radiographer was my best mate practically before the scan. After, he blanked me totally! I thought "oh shit, he saw something bad". But then I figured he's like that with everyone because he doesn't want quizzed on the results. But then my scan results weren't exactly great so...?

Waves to everyone else! Hope things are going as well as they possibly can XXX

draw a line under your rectum

I bloody wish someone would draw a line under my rectum! It causes me no end of trouble

namechange I know!!!

Hi all

I have finally caught up with the last thread and this one so a little late to do my recap but here it is.

I was diagnosed with a Small bowel NET (Neuroendocrine cancer) in 2016 and had a significant amount of small bowel removed as well as half my colon. They managed to join the bowel without a bag which was good. The cancer had spread to some of my lymph nodes so I was told I will be under surveillance for life and they will remove whatever pops up.

I had half my thyroid removed after they discovered a suspicious mass in it in 2018 although this thankfully turned out to be benign.

My latest scans were clear and blood tests were good however in the last 6 months between scans my uterus has become "bulky" so I'm now waiting more tests to look at that. Also have a colonoscopy next week followed by a abdominal and pelvic ultrasound.

I follow all your stories but find it very difficult to keep up and remember who is who sometimes so I apologise for that.

Hello to all who have had to join the thread, I hope you don't need to be here for long and feel supported in the meantime.

Sending special love to Leslie and Purple, you are both amazing.

Miri joined the lacies about the same time I did - her relapse was about the same time as my diagnosis.

Feeling rather right now

Pandora is fine and enjoying the happy pills .
KeepCalm hope you're in a similar situation!
Purple fingers crossed for the great escape later.

Here 🙋🏼‍♀️ doing okay. Still in hospital. Two drains. Stupid thing in hand making it difficult to type. Hope you're okay @Pandoraslastchance.

Love yo you all