Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

Bloomin brilliant @ememem84

I’ve done my first of 12 pax with cold capping. Managed ok - it’s like coming out of the sea when surfing with a stiff breeze going! Felt slightly queasy but ok and they’ve sent me with drugs just in case.

Well done @dancingwhilstfacingthemusic

Glad you've eaten @ememem84 I hope you get a good night's sleep. We're on the same path and at the same stage!

Thanks @BatshitCrazyWoman I’ll celebrate your end of chemo at the end of pax - I’ll then have 4 x ec but will be seeing the light I hope by then.

@dancingwhilstfacingthemusic well done you! Getting that first one out of the way is a milestone in itself. I hope you’re feeling ok this morning.

@BatshitCrazyWoman yes! Same sames!

im doing ok. Slept 9-3 and then had to get up for a wee and then DH woke me up with breakfast at 730 so I could take my meds.

I'm back home from my big day out (!) - blood tests, MRI and ultrasound. The lovely radiologist looked at my MRI, and did my ultrasound, and said that the lump has shrunk a lot in size and has started breaking up which is 🙌 and makes the feeling so grim after each EC worth it. Obviously she's going to do a report for the oncologist, but she wanted me to know (I was peering at the screen 😂). So relieved.

How are you feeling @dancingwhilstfacingthemusic and @ememem84 ?

That is bloody brilliant @BatshitCrazyWoman really good.

am I right in thinking the three of us (me, batshit and @ememem84) are all starting 12 pax? Brains already wonky!

im ok. Gawd that weird taste in the mouth eh? I’ve a mild tummy ache and have a hot water bottle. A little nauseous but not too much. Trying to avoid painkillers as my liver markers were up (because of the paracetamol!) and I want to avoid irritating my stomach with ibuprofen. I’ve permission to have paracetamol if I need to tho. They’re going to scan my liver next week as a baseline and have managed to arrange pre chemo bloods at the same hospital. This one is a 45 min drive from home and where I have chemo is 30
mins. Delighted to have such centres of excellence but I’m not driving yet which means someone has to take me when I have bloods the day before as well as on chemo day (obvs can’t drive on chemo day).
already sleeping in stages so podcasts and audio books are great resources.

Hope everyone else is buggering on ok.

@BatshitCrazyWoman thats great! Are you having Phesgo/herceptin before surgery? If so, me too. Very pleased for you whatever you’re on!

@dancingwhilstfacingthemusic i think so yes. I start my pax on 5 nov.

ive just had a nap nap. So nice. Dinner in a bit. I feel a bit bloated and am due some more meds so will take those in a bit.

@BatshitCrazyWoman mate im so so pleased for you. That’s amazing news xxxx

I've got my final EC tomorrow, then in a couple of weeks I start on pax. And yes @Littlecaf that's when the Phesgo starts.

I'm so relieved about the scan, as I felt grim after chemo #3, it means that even though I will feel grim again for the next couple of weeks, it will be worth it.

Excellent news @BatshitCrazyWoman, glad you're not feeling too rough @ememem84 and absolutely to keep on buggering on @dancingwhilstfacingthemusic.

My op is fixed for next week with a meeting the day before to discuss it, I'm beginning to get a bit twitchy about it all, whilst it's good to be actually getting on with something the reality and enormity of it is sinking in. Not so much the surgery but that this is the start of the process.

I've no idea what to expect in the terms of pain/recovery time etc but hopefully that will be covered beforehand. So this time next week I'll be minus a 5cm lump 😬

I'm so glad you've got a date @frostyfingers - completely natural to feel that way, I would say.

Wierdly I felt the worst afterEC 3. But I felt the worst whilst having it too. Hasn’t eaten enough or drunk enough that day though.

I hope I won't feel as bad the next time then @ememem84 ! I'm not eating that well at the moment (have lost 5 kilos), and once I'm in the chair I don't want to eat, really.

Brilliant that you’ve a date at last @frostyfingers These random friends in your phone are right there!

I found the pain minimal through all three operations. I told them I’m prone to nausea so they took that into account with the meds. I took the odd paracetamol when I needed it.

I found a few more pillows helped in bed as I slept propped up a bit to start with. A lidded cup for water or some sports bottles by the bed helped as I was thirsty. Having had the op on one side and discomfort from a canula on the other, keeping things lighter helped.

I needed help a few times to sit up after my mastectomy. As the bed was full of pillows dh slept in the spare room. I mostly summoned him by giggling as I was stuck in my back like a dying fly - trying to “tip up to sit up” hurt my wounds in the early days. It was soon sorted but I would have had problems on the occasions I needed a wee in the night if he wasn’t there.

I don’t know if you’ll have drains fitted. If so, make sure you have some pee pads on the bed in case of leaks. I may have been unlucky but had a couple of nights with leaks and the towels/ pee pads protected the bed. Having some spare night clothes to change into was helpful.

it is such a little time and you’re soon up and about. You’ll be pleasantly surprised at what you can do, I hope but do rest up and heal.

That's really helpful info @dancingwhilstfacingthemusic, thank you. Pads ordered just in case!!

Also, I found it uncomfortable to put my bedside light on and off (weird little clicky button) as it hurt to stretch my arm out (one side has a frozen shoulder 🙄). I got a lightbulb controlled by Alexa and it’s invaluable for night wakes. I also put an Alexa mini into the bedroom so I could ask it the time when I woke. It plays music and podcasts for me if I’m a bit wakeful too. A friend brought me one of those headbands with built in earphones for when dh returns after the pillows have been evicted!

Operations are usually a day case. I had a mild complication after my first one and was kept in. It’s useful to have an overnight bag packed just in case Pop some earplugs and a sleep mask in as wards can be noisy with odd lights. Hopefully you won’t need this!

after your op they should allow you your phone (once they’re happy the major Colombian drugs are out of the system - I was worried I might post something odd on fb!!). You may want to take headphones to listen to music and a battery pack.

Sorry popped on here to moan, yesterday was 5 of 6 of TCHP, felt absolutely awful. Never felt worse. Culmulative impact I think of being slightly anaemic and recovering from a chest infection. Nurses suggested Floradix iron supplement (short term) to bring my iron levels up - took it yesterday no problem, threw it up this morning - I haven’t been sick at all on chemo - horrible fatigue, aches and pains but no actual sickness, was so shocked.

I know that the next week will be horrible side effects, I’m totally dreading it. It’s been mentally hard and exhausting already, can’t believe this bloody medication leave the best til last….. only one more to go though. Thanks for listening.

@dancingwhilstfacingthemusic some really helpful info there - thank you - my op is mid Dec (hopefully)- like the idea of the overnight bag just in case - my surgeon appointment is mid Nov, I’m not even sure what surgery they are likely to do - my tumour has shrunk so much I can’t feel it - they were originally talking about a lumpectomy but the last oncologist I saw said it would be a mastectomy - I don’t even know if a reconstruction is possible - so little time to think about it.

Poor you @Littlecaf - please just rest and let the poison do its job. I hope you start to feel a bit better soon (my last EC today, and I've written off the next 10 days 🙁).

It’s bloody grim eh @Littlecaf you’d think that treatment for something that was trying to carry us off would be marshmallows and rainbows, not the opposite! Just one more. It’s great that the tumour has shrunk. I’m in a similar position in that I have the tougher chemo at the end. I’m on 12 pax, 4 EC but have already had my op (well, three, as the lumpectomy and second op didn’t get clear margins).

hopefully your surgeon will be able to provide clarity soon on what the op will be and to explain the options open to you. Everyone’s situation and decision is their own but I found it useful to talk to women who’d been through this to help me to think it through. I had an immediate reconstruction with implant - mine is an expander implant and was inflated a couple of weeks after my op. I’ll have a nipple tattooed in due course. Personally, waking up to a little shape (it started with the expander about 1/3 full) and still having a cleavage helped me. Some people need to go flat or choose to.

I was also asked to think about later reconstruction using my own tissues which wasn’t for me at this point but I have a good friend on the waiting list for the same procedure a few years on from her mastectomy.

I’m in the early days of claggy mouth and am lying down with a cool pack on my picc arm as it’s bloody sore. It should settle as it only was done a couple of days ago. In my alternative reality I’m being tended to by nurse Trixie from call the midwife, with kind and caring attention and no nonsense. She’s going to give me a talking to about sitting up and attending to my beauty routine shortly.

I’m going for my 9th food in about an hour and am debating whether to put any make up on or not. It’s true it does make u feel better though. I’ve had three weeks off to am keen to get on with it. The side effects are quite vile and I have family coming to visit next Thursday so I’m hoping I’m over the worst of it by then.

@Littlecaf Just coming on in solidarity. I had my 3rd EC on Monday. Low level nausea was an issue for one and two but nothing I couldn't handle. Number 3 I did all the usual ..drink water like nobodies business, little and often eats.. even put on some of those travel sickness wrist bands. Thought I'd be fine. Had chemo at 10 am. Stopped throwing up 6am following day. WTF! Floored me. Started to feel slightly more human by yesterday. I move to weekly pax next ...just hoping I manage that better but I know we're all different. I did have to laugh..someone in the chemo bay asked if the travel bands work? I couldn't give a review at the time and she probably wouldn't want to know now!!!
Hope you are feeling better soon xx

Hello! I've just finished reading through the thread and would like to join.... recently diagnosed with breast cancer (invasive lobular carcinoma, grade 2, hormone positive, HER2 negative).

Noticed very subtle changes (slight thicker area of tissue, slight areola dent under specific conditions), went to get checked, nobody could feel more than a slight thickening and nothing showed up on the mammograms. Ultrasound showed small area of distortion and biopsies confirmed diagnosis.

They currently think it is very small, but I don't quite believe it until the MRI, as apparently lobular cancer can be hard to spot and I have dense tissue too....

Currently feeling as ok as possible under the circumstances (waiting for the biopsy results was AWFUL!) but very impatient for the MRI..... also have no idea what treatment will be needed until after the MRI.

I have a strong family history so am being referred for genetic testing too.

This thread has been remarkably helpful already....thanks and very best wishes to all......

thank you for your messages @BatshitCrazyWoman @somewhereonthe517 @dancingwhilstfacingthemusic lots to think about, just want to get through the next week without too much sickness or diarrhoea, or worry, that is the worst side effect, every little ache and pain is “had it spread”. Sometimes the mixed messages from the lovely but busy medical team is confusing “talk to us if your worried” then “it’s nothing to worry about” is not always the best answer!

Welcome @MeowSplat , sorry you’ve had cause to come here, hopefully you’ll continue to find it helpful. I also find the MacMillan breast cancer boards helpful for specific questions - do ask - and sending you love & hope!