Cancer Support Thread 97: support for those diagnosed and going through treatment

[LiliJilliBobs]

Cancer support thread 97: support for those newly diagnosed and /or undergoing treatment…..
Thread 96 is pretty full - here’s a new one

Oh, and that little bowling ball baby is probably the reason for your bad back 😁

@dancingwhilstfacingthemusic I love little notebooks and stationary so it felt like a treat finding a nice one. I’ll probs open it one day to find my 8 year old has been enjoying it too ha!

@Poledraice lolly moulds are now on shopping list. I’ll task my eldest with ice lolly making patrol, give her something practical to do so she feels like she’s helping.

No doubt with the bowling ball, that’s how I rationalised my fear when back would twinge. I’d tell myself it’s no wonder my backs in pieces hauling around this chubby little fat fat. Started weaning her yesterday, she keeps doing snatchy baby grabby fists whenever I eat something so I think it’s time. I gave her one of those melty wafers and she annihilated it in about 15 seconds 😂. Was so funny. Could see the joy on her face as she was trying to shove the entire thing in her tiny baby gob. I got my eldests red book out and was comparing their weight graphs and they followed a similar trajectory (DD8 was 7lb 7 at birth and 6mo was 7lb 8). Then you can see the bowling ball just kind of shoot up a percentile at around 3 months 👀. She was on 7oz by 3 months.

Struggling a bit with pain from biopsy site a bit this morning, I seem to bleed a lot (always have, had transfusions after giving birth, I’m just a bleeder) and the nurse was pressing really hard to stop the bleeding so think I’m bruised. I’ve dosed myself up on co-codamol, naproxen and lansoprazole, Baby fat fat is having her morning nap so think I’ll slink off upstairs to bed with her for an hours kip myself. Cuddly little bugger she is, like a tiny tranquilliser.

@FcukBreastCancerhow did you get on today? Did you have armpit stabby and did they say anything more on dates for your CT?

Not having the best day today, fertility preservation didn't work.
Today is day 5 after the egg harvest, only 2 fertilised and both stopped growing.
We've already delayed starting treatment for this and really can't delay again.
I knew there were no guarantees, but this has knocked me more than I expected.
Staying positive sucks. I think I'm going to curl up, cry lots and hope I start to feel better before chemo and radiotherapy Wednesday

Oh ForestFlowerFairy, so sorry 💐
Take the time to grieve, do something fun with your other half, and wishing you strength and peace for Wednesday

I hope you’ve managed to move the holiday LiliJilliBobs

I have a once in a lifetime family trip booked which of course is totally non refundable, 6 long haul return flights booked, extremely expensive event tickets etc, all booked just before diagnosis. When I was told it was just polyps, no issues foreseen.

My surgeon knows I am still planning to go, is also encouraging me if at all possible although has made me book wheelchair assistance at airport and every venue, and is seeing me to decide if I can fly 5 days before. If not have told them all to go without me, as I would be gutted for everyone else to miss out because of me. They’d only be gone just over a week.

In the meantime I am still waiting for histology results, and praying to every deity and anything else I can think of that results are clear. Every other time I was told by respected professionals that it would be fine and unusually it wasn’t, so I’m not overly optimistic.

@ForestFlowerFairy I’m heart sorry for you, that’s beyond shit. Staying positive does suck I agree and it’s no surprise this has knocked you for six.

Can I curl up and have a cry with you? We can have a good cry together. Had a row with DH this morning. I asked him to take the youngest down for her first feed whilst I get myself together, I need to move about a bit to get going in the morning after the biopsy, it’s hurting a lot plus they’ve told me not to lift. He pulled his face and whatever. Anyway it escalated a bit, he’s made me feel like I’m being dramatic and unreasonable asking for some help. It’s a long story but I’m fucked off, he left for work (which he doesn’t even need to work on a Saturday, he does it to work on his project car as he’s a mechanic) and I’ve been upset most of the day. It’s like the wall of resilience I’ve built around myself has come crashing down. I feel like he’s not standing with me on it. There’s more to it but I feel like I’m a pain in his arse basically.

@OhNoItsAdeno I’ll help praying to all these deities with you for your histology results. I’ll add in some toe and finger crossing that your surgeon clears you to fly for your trip, we all need some bloody fun and happiness and the minute and I so hope you get to go.

@cannaecookrisotto we can absolutely cry together, I've had a good nap this afternoon which has helped a bit
I'm sorry your OH has been a dick, I know my DH is trying but my god you should have heard the argument we had when he said he felt 'unsure' about needing a blood test and providing a 'sample'
He's trying his best and mostly supportive and logically I know it isn't easy for him but that doesn't mean I don't want to punch him in the face for stupid comments.
I can't imagine how hard this must be for you with young children

@OhNoItsAdeno joining in with the fingers and toes crossed for you and your trip
I sincerely hope they don't go without you - I feel a trip before or even after treatment would do you the world of good.
All I can think about is escaping to the middle of nowhere, so all those escape vibes are being sent your way

@ForestFlowerFairywhy are they such dicks sometimes? He was moaning that his piles were aching yesterday when I asked him to do the last feed so I could go to bed. I think the patio is due for re-paving 🤔. I’ve told him if he carries on annoying me I’m going to phone his mother and tell her, she’ll give him some shit on my behalf. Love his mum.

I keep telling myself “it’s hard for him too, he’s worried too, he doesn’t know how to process his own feelings” but like you say, doesn’t make me want to punch him any less.

It’s hard with the kids yes but otoh they force me to get out of bed in the morning and crack on, when some days I would just lie in bed and bawl my eyes out If I could.

Amen to the escaping to the middle of nowhere. I was fantasising about just pissing off to the Bahamas on my own and waiting for it to just blow over 😂.

Sorry to those of you having a bad day.
My dh is fussing over me and I should be grateful *but told him he doesn't need to ask if I'm OK every time I walk in a room.

I've had fertility issues myself and know how heartbreaking it can be. Much love to you @ForestFlowerFairy

I had a biopsy friday. She wasn't going to do it and wait and see! No thanks to that idea!! If it's spread to other breast it changes my treatment plan. She did say the ultrasound looked OK and did some stabbing in the place where mri picked up dye. Thankfully it didnt hurt like last time. I'm sure the local anesthetic hadn't done anything.

So now 2 week wait for that
CT still not booked
HER2 result still with lab in London.

So no treatment plan and the consultant was way over optimistic when he said within 2 weeks. And now I've told my kids, work and friends so getting a million questions. I think he talks a bit of shite tbh. The nurse has corrected some of his misinformation a few times. I see her write a little note and she tells me after. He got her name wrong too... she must be rolling her eyes! He's a locum and should be retired so perhaps not as up to date as the nurse specialist.

Glad your biopsy didn’t hurt @FcukBreastCancer, how are you feeling today? Are you getting any tenderness or is it minimal? Consultant sounds a bit senile, I bet all the nurses feel dread when they see him pop up on rota.

can relate with the million questions. I made my DM set up a family and close friend WhatsApp so we could update there because I was getting sick of the update requests. So now they know, once there’s news it will go in there. Then that turned into a “sparkly unicorn positivity” cesspit so I had to lay some ground rules with a list of banned words 😂. I get by much better on normality with a bit of morbid humour thrown in.

You should give me your BCNs direct number. I’ll tell her I’m your cats sisters mums cousin twice removed, and ring every 6 minutes until you have a CT date 😁.

Today - I am hungover! I'd not been drinking much and so overdid it last night. And I puked in the night! Well that will put me off wine for a while 😅

No pain from biopsy. Last time it swelled up, I think it made the cancer angry.
She didnt stab me where I thought she would (additional breast tissue under arm). I'd like to see the MRI myself.

Dh wants me to message a vauge friend who is a radiologist at our hospital to push CT. I said no way I'm doing that! Nurse said she'll keep checking for me. Now we have a two week wait anyway. Or, dh said he'll get someone to book it at his hospital. That's an option I guess, but dont want to jump the queue. (Dh is a doctor)

@FcukBreastCancerget Dh to book or message your friend.
What is the point of having a DR in the family if you don’t use it? Glad you are feeling ok and hope the hangover isn’t too bad. A few days before my op, when it had been described in detail to me by one of the team, I got so drunk I had to crawl to bed 😳. There were some interesting bruises. I denied everything and said I’d fallen out of bed ;)

and @cannaecookrisottoi totally agree on the banned words. I told everyone who might even consider suggesting anything alternative to back away quickly or it would be shoved up their 🍑 and they would then be blocked. No sparkly unicorn shit at all. In fact my first message to everyone once I got my phone back postop was ‘not dead yet…’

@OhNoItsAdeno have you had anyone suggest ivermectin and febendazole yet?? My weird cousin did and said I was showing symptoms of parasites rather than BC. He was deadly serious. I didn’t know whether to laugh or hit him over the head with my daughter’s iPad. I was like “yer fecking what?” 😂

Had to Google the ivermectin and febendazole. Pretty sure I've given those to my pets!

www.anticancerfund.org/en/blog/separating-fact-fiction-repurposed-drugs-cancer-treatment

Bloody hell, I WISH I had worms. How cool would that be?
In fact, gives me worms, PMS and a side of man flu over all this shit.
Did you knock him out @cannaecookrisotto - I don't mind being your alibi

Good ISH news on the insurance, they now have all paperwork and will now assess my claim, Google suggests from this point it's 1-2 weeks for a decision.
I've also submitted a claim for my income protection today, they sent me a link to sign up to, which I did, and then it claimed the password I'd just created and saved using a password manager was incorrect. ARGH now I have to make another phone call,
I hate phone calls.
I hate insurance companies.
I strongly dislike @cannaecookrisottos weird cousin

No, not yet, but my equally weird cousins did suggest iverwhatsit for Covid and I think took it themselves. What is it with weird cousins? 😆

Good news for insurance 🤞 it comes through quickly.
and bugger the password nonsense…call them and they should be super helpful. Like most bereavement depts, there should be lovely people who answer and do it for you quickly. I’ve had some super helpful ones when dealing with DF’s mess of probate paperwork stuff, keep pressing the button til you get through to the extra helpful team

@OhNoItsAdeno they were sortof helpful - no clue technically but they allowed me to email everything in, so hopefully we get somewhere soon ish.

Should I feel disappointed my cousins haven't recommended anything weird to try?!

How much simpler this would be if indeed we just had a few worms 😂. @ForestFlowerFairythanks for being my alibi, I see this cousin quite a bit so there’s still time!! Glad you’re insurance paperwork is going through, poop about the phone calls, it’s just extra shite we don’t need right now. I also strongly dislike him at the moment and this made me laugh out loud so thanks for that, I needed the giggle today.

@OhNoItsAdeno oh god, you have an ivermectin cousin as well?! Mine used it as well for a full “body cleanse”!!

In other news, had appointment with Oncologist today and it’s all become clear. So I’m stage 3 (the size of the fucker and the fact it’s taking a holiday in my lymph nodes), IDC TNBC.

Treatment plan:
EC-PC plus Pembrolizumab weekly for 12 weeks, then every 3 weeks x 4, so 24 weeks total, followed by surgery, then radiotherapy, then some more immunotherapy on the end for extra sauce.

Oncologist said they’re going to keep close watch over the next couple of weeks to monitor response and if there’s any whiff that the response isn’t what they’re expecting they will do surgery whilst it’s still
operable.

First chemo this Wednesday. Port fitting next week. They didn’t want to delay treatment until
port fitting so first one will be cannula.

So, i’m in here for the long haul (pops on slippers and gets comfy).

Crikey that sounds like a lot @cannaecookrisotto but I'm pleased they are moving quickly now.
I'm always speechless when I hear the treatment plans, and the sheer scale at which it overtakes people's lives.
I do hope Wednesday goes smoothly for you, I'll be waving to you from my first session at Castle hill

Oh @cannaecookrisotto I'm glad you have a start date now. That all sounds very quick which is good, but I imagine it's all a bit overwhelming.

I hadn't thought about grade for mine, but just had a Google and so guess I'm borderline 2-3 at 5cm and I don't have the answers on spread yet. I knew that consultant was lying about finding it early (as I know it's been there bloody ages!)

That is indeed a Lot @cannaecookrisotto But you have a plan. Now to smash it and kick the CF cancer up the arse.

@ForestFlowerFairy are having your first on Weds too?? We can be chemo buddies!!

@FcukBreastCancerthey said that triple negative is usually grade 3 and because I’m “young” (34) my cells replicate much quicker anyway. So it’s an aggressive tosser but hopefully will suck up the chemo and get the fuck out. Have they said when you’ll get CT yet?
They said today that they’re going to do an US of my pelvis as although it’s clear, they can see a prominent vein or something on one of my ovaries so just want to cross the boxes. Oncologist looked me in the eyeballs and said she’s not concerned at all about it and it’s normal for people to have a few things pop up on CT. It’s not often we get to have full body scans so there’s usually something knocking around in there.

It Is a lot. Oncologist says because I “still have a lot of years left of life” 👀, they want to throw the book at it to give it the best shot and prevent reoccurrence. So I’m happy for them to do what they need to do and I’ll take every side effect smiling as long as it means I get to stick around for the kids. (This attitude will likely change next week when I’m shitting my pants and vomiting at the same time).

Also, as part of port fitting procedures, I had to do some swabs to check for MRSA. One of which was up my nostrils, the other of my perineum… I asked her to confirm that she did indeed mean the area between my two main holes and she said yes. She offered assistance to obtain said swab but I declined 😂. Was told not to just do a gentle swipe, but to make sure I gave it a good waft. So was stood in the loo swabbing my perineum as enthusiastically as possible. Nobody warned me of the perineum swab. No. Body.