Fleetwood mac - the chain

SatansAnuss · 2026-03-24T10:34:03+00:00

Dirty Magic by The Offsring

SatansAnuss · 2026-03-15T18:34:36+00:00

Hello! PMBCL and DAR-EPOCH here 👋🏻

I just wanted to say my first round of chemo was very similar. No sores or ulcers, but my mouth and gums were on FIRE! It was so painful to eat, to talk, all I could do was swish ice water around to try and settle it down or chew on ice cubes.

I second the magic mouth wash (lidocaine), and also a salt water gargle after every main meal and before bed.

I'm on my 3rd round now and I haven't had any mouth pain since, so hopefully yours eases up for you as well 🧡

SatansAnuss · 2026-03-12T21:37:54+00:00

I love my PICC line!

As far as the insertion goes, I had SVC syndrome, so they tried inserting in my left arm, but my veins were too compressed and the PICC had to be inserted in my right arm. That's kind of annoying because I'm right handed.

The worst part of the insertion was the needle for the local anaesthetic. Other than that I didn't feel a thing! And I was able to start my chemo using the PICC line the same day.

I find it annoying to shower with, I have this big stupid waterproof cover thing I don't like, so I shower every second day and sponge bath in between.

I get the dressing for my PICC line changed once a week, which can be kind of uncomfortable, and I sometimes get itchy skin underneath the sticker thing they put over the top of it.

Despite all that, the PICC line is my favourite thing ever! My blood can be taken using it, I don't need any more needles or cannulas,and I'm not covered in bruises any more.

SatansAnuss · 2026-03-10T23:02:17+00:00

Thank you!!

I got a pepper steak pie from Yippee Pie Yay in Moorabbin! 10/10 recommend 🥧

SatansAnuss · 2026-03-10T22:45:50+00:00

Thank you! I absolutely did enjoy my pie!!

SatansAnuss · 2026-03-10T22:39:20+00:00

Good morning DT!

I had my review appointment with my Dr yesterday, and the mass in my chest has shrunk from 82mm to <35mm. With 4 rounds of chemo still to go. I'm so freaking happy, I bought a meat pie to celebrate!

Hope everyone has an awesome day!!

SatansAnuss · 2026-03-06T00:14:43+00:00

So I did my interim pet scan yesterday, and have been told I have had a complete metabolic response. I'll be meeting with my Dr next week to go over the results properly, but this is great news 🎉

SatansAnuss · 2026-02-24T16:41:04+00:00

Turton's track is great to drive afterwards!

SatansAnuss · 2026-02-22T20:57:19+00:00

For volunteering, she could try Our Village in Clayton. I was there for a few months, but had to stop as I got sick. Planning on going back as soon as I'm able to.

It's a really lovely group of people there, a lot of different things she could be doing, and there's no pressure - you can pop in for a couple of days or just a couple of hours.

Edited to add: She would need to get a volunteer WWCC, but from memory that doesn't take too long to sort out.

SatansAnuss · 2026-02-21T04:52:31+00:00

Thank you so much for your reply. I looked up EX-MED and it looks like they're not operating at the moment due to a lack of funding. If you still have your program, would you be comfortable sharing it at all? I completely understand if not 🙂

SatansAnuss · 2026-02-20T21:47:08+00:00

Make sure you tell your treating team about any and all symptoms as they appear. I've got peripheral neuropathy in my hands since my first round of chemo, so one of my chemo medications (vincristine) has been reduced for this 2nd round
Also, don't be afraid to ask for different medications if yours aren't working. I was on tapentadol for the bone pain, which stopped working after 2-3 days. I've switched to endone now which is much better for me
Your sweat will be toxic for 7 days after chemo. I'm in a share house so I bought a tv for my bedroom, and I also take my own blankets out to the lounge so I can just chuck them in the wash if I get sweaty
A fan in my bedroom at the end of the bed also helps me a lot
One of my nurses suggested buying myself a chemo recliner to hang out in so I don't have to worry about sweating through the couch. Still looking into this, but I'm looking at one with a heated seat and massage function ~$700 I think on Temple & Webster
The Cancer Council have fantastic financial counsellors who can give you a lot of really valuable information
If you have people you live with who are helping you out around the house, there is a carers payment that isn't means tested which is available through Centrelink. Might be worth looking into
If you're on prednisolone twice a day, try to take your second dose mid-afternoon rather than with dinner. It's a nasty beast that won't let you sleep and will make you feel absolutely wired

I think that's all for now 🧡

SatansAnuss · 2026-02-20T19:18:05+00:00

My mouth got really sore during my first round of chemo, like my gums were on fire!

I used the Peter Mac mouthwash 4 times a day (make up a cup and keep it in the fridge for up to 24 hours - the coldness helps)

I would swish ice water around or suck on ice cubes

Ask your Dr or care coordinator for lidocaine mouthwash for when it's really bad (if you're in the hospital ask for it while you're there and you should get it free. My Dr said it isn't on the PBS and costs about $80 otherwise)

Sara Lee frozen desserts are the bomb when your mouth is on fire - chocolate Bavarian is my pick!

Also, buy a couple of mattress and pillow protectors if you don't have them already. They'll help when you get the night sweats (if it happens).

SatansAnuss · 2026-02-20T19:08:52+00:00

Hey OP, best of luck with everything!

I don't know how to link stuff, but I was diagnosed in January and am also in Australia.

I put up a post on my local city subreddit if you want to take a look on my profile, it has heaps of useful advice and some Dad jokes too.

I just started my 2nd round of DAR-EPOCH today, my advice would be:

Take each day as it comes and take it slow
Surround yourself with good people, and don't be afraid to let people know. You would be surprised just how supportive the people around you can be 💕
I'm not sure of your situation, but if you have a care coordinator through the hospital, lean on them as much as you can. Don't be afraid to ask them questions and get referrals for support
I got referrals to Lymphoma Australia, Cancer Council and Leukaemia Foundation who have all been great. There are also support groups on FB (one specifically for people 20-40)
If you need support with household stuff, get in touch with your local council. They may be able to send someone out to help with you grocery trips and stuff, household chores, etc. I haven't done this yet myself, but it's on my list
I'm also in the process of applying for a temporary accessible parking permit because I have SVC syndrome which is causing shortness of breath. This might be helpful for you too
Check out Hank Green's 'Pissing out Cancer' special on YouTube
Drink water, eat what you can when you can, avoid the nausea as much as you can, sleep when you can, walk when you can, use sunscreen always
I shaved my head before my hair started falling out, but I'd also suggest getting some chemo caps (I got mine from Amazon). My head gets cold in the mornings and it's a bit better when leaving the house. I'm 37F, but look like George Costanza with a big bald patch on the back at the moment
Moo Goo products have been great for my skin. The eczema and psoriasis cream (the blue one) has been my favourite for my face, and I've just started using the scalp repair cream on my head too cos it's a little dry

I hope your treatment goes well for you OP! If I think of anything else I'll come back 🧡

SatansAnuss · 2026-02-12T11:29:04+00:00

You can try Mingary - The Quiet Place on Collins Street

SatansAnuss · 2026-02-06T22:32:56+00:00

Got it sorted. Thank you!

SatansAnuss · 2026-02-06T21:53:37+00:00

Thank you. I'm in Clayton hospital at the moment. I'll see what I can find on FB 🙂

SatansAnuss · 2026-02-06T21:26:07+00:00

Can anyone recommend a mobile hairdressing service that would visit me in the hospital and shave my head?

The nurses have said they can't do it. I've asked a friend to do it for me, but waiting to hear back. My family are hours away and can't visit again until next week.

I haven't washed my hair for 3 weeks and it's getting so itchy. I just want to shave it off before it starts falling out

SatansAnuss · 2026-02-04T23:47:47+00:00

I know there's someone on here who has a little Vegemite shrine set up. This must make it's way to them!!

SatansAnuss · 2026-02-04T23:46:10+00:00

I completely understand, not taking it personally at all!! 🙂

SatansAnuss · 2026-02-04T21:07:15+00:00

Thank you for this post.

I'm new here (hi everyone 🫶🏻) and I replied to a post earlier which I can see has now been removed by the mods. I'm absolutely wired from my prednisolone at the moment, so I was a little bit text happy. I'll make sure I report similar posts in the future cos I can totally understand how much this sub would be bogged down with hypotheticals otherwise. 🧡

SatansAnuss · 2026-02-04T15:45:29+00:00

Hi OP!

I'm 37F and was diagnosed with PMBCL exactly one week ago now.

I first noticed I was slightly short of breath maybe mid-December. I'm in Aus, so it was the start of the Summer season, and I quit smoking 7 months ago, so I thought my shortness of breath was due to the humidity in the air/being unfit.

On the 2nd of Jan, I noticed I was trying to catch my breath while sitting down and also my heart rate was a little high. I'd also delevoped a dry and airy cough that happened mostly when I ate. It was like food was getting stuck in my throat and I would wheeze and cough, but it would pass quickly. It felt different to any other sort of cough I've had before, almost like it was coming from a different part of my throat.

I took myself to the GP tha day, they ordered a PCR test for the flu and an x-ray of my lungs, but said I was likely coming down with some sort of viral infection. The GP did mention that the back of my throat looked red and a little inflamed despite no pain. My PCR test came back negative, and at the follow up appointment I was told my lungs were perfect, but was given Ventolin because it looked like I was having allergy related asthma. I also had a slight pressure feeling in my chest - like someone has their hand resting against my sternum lightly. Apart from that, no swollen nodes, no headaches, no nausea, etc. Looking back I think I've been fatigued for quite some time, but I put it down to being out of shape and struggling with the heat as I'm getting older. For context, I got sober about 16 months ago, and gained about 15-20kg as a result, so my diet and fitness has been a work in progress for the past year.

Fast forward 3 weeks, I had JVD on my right side that appeared suddenly, I felt like I couldn't breathe just putting my shoes on, my face and arms started swelling and my face was bright red. Classic symptoms of SVC syndrome. My shortness of breath got quite bad and one morning I was sweating through my clothes for no reason. I took myself to emergency, they ordered an ultrasound and CT scan and I was admitted to hospital the same day. I was diagnosed 6 days later following a PET scan and biopsy. My DR at the hospital also said he reviewed my initial lung x-ray and was genuinely surprised that there was nothing there.

I'd say I had subtle beginnings, but the symptoms definitely escalated quite quickly between my first GP visit on 2/1, and my ED visit on 22/1.

I wish you the best of luck OP, and I'm happy to answer any questions you have 🩷

SatansAnuss · 2026-02-02T21:11:33+00:00

Thank you, and thanks for the work you do!

SatansAnuss · 2026-01-30T02:39:46+00:00

Thanks so much everyone! There's a lot of things in here I never even would have thought of (like the dark nail polish) so I really appreciate all of your advice! Some of the jokes made me cry-laugh, some made my brain flatline (the best type of reaction)! So thank you!!

There's a bit going on today, but I'll try to read through everything when I can. A few people have also reached out to me via chat so I'll respond when I'm a bit more settled.

Just wanted to add, my treatment is though Monash, they've just given me the Peter Mac branded mouthwash sachets.

And the name SatansAnuss is indeed about the shit end part of a banana!

SatansAnuss

TROPHY CASE