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 @cannaecookrisottosorry to hear the news, but atleast you have a plan now. Cross each week off the calendar and it will go quicker than you think.

I’m waiting to hear results.
feeling slowly better every day., apart from last 2 days of accidental absolutely minuscule milk ingestion in a bread item, which was super painful. Realise I have to avoid it entirely now and tell people I have a dairy allergy. 😫
as well as onion, garlic, brassicas, peppers, pulses, and fun…

on the plus side I am losing weight very quickly. Which I could use. 1.3kg today alone. My bum is foreign, and built for harsher weather and poor crop cycles. And now smaller than it’s always been. I am the thinnest woman in my extended mad conspiracy loving foreign family, and still fat. But 4..5 Stone less fat than January, due to symptoms and inability to eat almost everything. I may yet come out of this skinny - always a positive

And @cannaecookrisottoas for the invasive tests you didn’t expect…during surgery I had a catheter . And due to problems, was on longer it than anticipated. And due to stopping HRT before surgery got my period surgery day. Yay. No tampons allowed. And no pants allowed due to catheter. Just an inco pad.

well suffered an allergy to both too. My arse, bits and thighs suffered chafing and redness . More painful than the lap incisions. Then they swabbed them. I practically hit the ceiling. There were a plethora of swear words.

@OhNoItsAdeno I will take your spare weight and pop it on me, I’ve gone from a pleasantly plumpish 70kg down to 59kg. I’m looking positively skeletal and gaunt so send it my way! I’ve started drinking those calorie building drink whatsits to try and pop some weight back on. I have it it my head that I need to gain strength for chemo and at the moment I resemble skeletor.

when will you get your results? Waiting for results is well and truly shit. I’ve decided it’s now my least favourite pastime. It used to be going to pantomimes which I endured because DD8 thinks they’re hilarious. Oh how my perspective has changed. Would go to a pantomime every day for 10 years if it meant results were forevermore instantaneous for us all.

Glad you’re feeling better every day but sympathies for the minuscule milk ingestion of a bread item. Also garlic, I love garlic so I’d be horrified, my condolences.

Not surprised you swore to high heaven at the swabbing of your sore nether regions, I would have been the same. They’ve told me my periods are going to stop during chemo so I’m jotting that one down as a win. I had a catheter when I had a planned C Section back in March and I couldn’t wait to get it out. I practically bullied the poor nurse to take it out so I could pee in the jug. Apparently if I peed enough millilitres I could be discharged. I peed like a champ.

it’s annoying me that new paragraphs don’t start with a capital letter on the MN App, I keep wondering why my posts look semi illiterate!!

@PonyPrancing tentatively checking in to see how you are? I’ve read through this thread and saw you’re TNBC grade 3 stage 3 - same dx as me.

How are you doing?

Oh the bloody people and their 'have you tried...?' nonsense!! I have lost all patience with those numpties. I'm glad you have your treatment plan @cannaecookrisotto - I had dose dense chemo, but 'only' for 16 sessions. I was (and am still) enraged by the people that said (probably unthinkingly, but still. THINK before you open your mouth, people!) 'oh treatment for breast cancer is easy now' 😳😬 When I outlined my (long) treatment plan, and when they saw me shrink down to a size 4 and lose all my strength, it did seem to give them pause. If I'd had the strength I'd have told them to shut the fuck up. It's not just a little course of tablets!! Anyhoo, I'm getting stronger each day, and I wish that for you all

@cannaecookrisotto I have no dignity left as had surgery on by butt hole last year.

And yes they seem to always find something on a scan. I had a CT when they found i had appendicitis and they then wanted to MRI my liver. I assumed it was pickled from wine consumption, but it was a vein type thing that looked as a small abnormality

I'm calling nurse today. My Google last night promoted a load of questions about lympy nodes. The radiologist on Friday assumed I was having chemo, so I think she saw something I didnt know. It just clicked in my mind.

I'm a little torn on the weight thing, from the original tumor removal and feeding tube fitting I dropped about 5kg taking me down to 58kg. So was officially in the 'about right' category, but the fertility treatment gave me a sweet tooth and I ate SO MUCH junk food now I think I've probably gained it back judging by the tightness of clothes.
I think I'd like to end this around the 56kg mark, I'm only 5ft...who knows will there be a silver lining to all this shit?!

@OhNoItsAdeno other than my DH I've never met someone else who can't eat onions or garlic, he also can't have chilli which makes cooking and eating out SO difficult, but it's forced us to get creative and we're pretty good at home made burgers now 😂

@cannaecookrisotto indeed we are chemo buddies, although I only have 6 sessions as my main treatment is the radiotherapy which is 5 x a week for 6 weeks.

I hope there are no more surprises with stupid side things that they spring on us. My main thing is the 'buttons' with the feeding tube, though the nurse should be removing those Friday and I cannot not express how excited I am to have them removed but equally terrified of it hurting

Yep @BatshitCrazyWoman, I’ve had about 76 conflicting alternate therapies at this point 😂. 16 sessions is a lot! I know what you mean as well about “BC is easiest to treat” and I’m like IS IT??!? Like feck it is. Glad you’re getting strength back. Mum was asking Oncologist yesterday about my diet and such and Onc basically said eat what you want whilst you feel like it during chemo, try and eat healthy greens and fruit but getting food in is the main thing.

@FcukBreastCancerooo I have a vein type on my ovary. Going to have an ultrasound for some extra fear. Yes call nurse if anything to reassure you. Google is satan for me at the moment, I’m terrified of it so have steered clear of anything TNBC related. I do have lymph involvement by the sounds of it (waiting for biopsy) but onc said she’s 99% sure it’s going to come back positive. Have you had the date back for CT scan yet??

@ForestFlowerFairy I’ll be radioing later on after chemo so let me know what’s it’s like. I get the excitement/fear. I’m excited to start chemo because I want this thing to start being treated but shitting myself about actually having chemo. See also port fitting. I want it in asap but a bit nervy about getting it done. I’m sure you’ll be fine, these things always seem worse in our heads ❤️. I’ll check in on Friday to see how you got on with it.

If it makes you feel any better @cannaecookrisotto the port insertion was one of the easiest things! Good sedatives, too 😂

@BatshitCrazyWoman agreed

I’m going to ask for sedatives. They said they can do it under local but I’m going to insist on some sedation because WTF not 😂

@ForestFlowerFairy how did you get on today with your chemo?

Mine was ok. Paclitaxel, Carboplatin and Perimuzinbab (immuno) today. Felt alright, I cold capped which was tolerable, then they stuck my hands and feet into these ice cold mittens which were absolutely terrible. I kept cheating and pulling my feet out. I went into hibernation at one point and fell asleep. Pretty sure I had mild hyperthermia 😂. Frozen mitt/socks were on for 90 mins so I was counting down.

Port fitting early next week. Can’t do cannulation again. Took 4 attempts with 3 blown veins before they found one. Apparently I have small veins they say. Needles don’t bother me but didn’t enjoy, 0/10 wouldn’t recommend!!

Oh no the cannula sounds horrible.
I shall keep everything crossed the port goes well, and the sedatives are good ;)
I'm usually bad at giving blood but she went straight in today, although I was told to drink 3 litres a day which I started yesterday so I reckon I was pretty plump!
Today actually was ok, my main thing was to get through the day without being sick and that was achieved, even when we got home and discovered the dog had a bout of diarrhea, that's enough to turn anyone's stomach even without treatment!! - oh no what a shame, the chemo leaflet said I can't clean animal poo - so I left that to the OH!!!!

Talking of new fun side effects, the tingly feeling when they added the first drug, I swear I thought someone wiped my bum with stinging nettles - thankfully it only lasted a few minutes.
I also had a lovely chap next to me and we chatted for the first hour so that bit flew by, second hour not so fast, but it is what it is, 2 hours isn't so bad in the grand scheme of things

Well done on getting the first one done @cannaecookrisotto . Your veins sound like mine. MRI canula was a disaster. I will probably need one tomorrow FOR MY CT...yes finally.
I think they have my HER resul but won't tell me until appointment after MDT (mdt tomorrow)

And well done @ForestFlowerFairy . Great news that you have no shit to clean up for a while. Small wins and all that

What the heck are the ice mittens for?

@ForestFlowerFairyglad you had plump veins, mine were being tight feckers!!
Win on the dog poo, I have 2 cats and a bearded dragon. Oncs eyes nearly popped out of her head when she heard about the dragon and told me to put that in a corner and told DH I must not put my hands anywhere near it. The dragon (Richard) has fresh greens 3 times a day and live locusts twice a week so that’s a chore I’m happy to hand off!!!

I didn’t feel anything when stuff was going in, but the Paclitaxol made me drowsy and I had to have a nap (although I think this was hibernation from the ice mitts and socks). They’re to help prevent neuropathy apparently. Similar to cold capping except for hands and feet. The mitts were ok but I could barely tolerate the socks. I kept slipping my feet out.

I arrived at 09:00 and left at 4pm but it flew by. Mum was with me and the nurses were fabulous.

I’ve got some Filgrastim injections that I have to administer at home over the next 3 days. Not looking forward to this!!

@FcukBreastCancerAMEN on getting that CT tomorrow and sending you all the best for it.

If they struggle with your hand, they can do your inner elbow for CT dye, I asked them to do mine there rather than hand as find hand much more unpleasant.

Let us know how you get on xx

@FcukBreastCancer another vote for inner elbow for the CT dye, it's where I have most success (well within 2/3 goes!)
They only like hands and wrists for the chemo cannula as it's much easier for them to see if there is a reaction or leak at the site.

I'll keep everything crossed for quick results from the MDT and a successful dye

Well it took 3 attempts and 2 people but they got the canula in. I did feel like I'd peed myself when the dye went through.

They said 10days for results. Got to be ffing kidding me.. mdt was this morning. No call yet. Hope they dont bump another week!

@FcukBreastCancerI would give them a call next Friday and see if there’s any news on your results after next MDT. Would be worth a go.

3 attempts is shit but I’m glad you got your dye! I too felt the peeing sensation (weirdly enjoyed 😂).

I’m first day after chemo yesterday. No ill effects yet, I’m sure they’re on their way. I like the steroids, made me feel wired half the day and did about 6 days worth of work in 1 morning! Did Filgrastim injection too, wasn’t bad at all, just stabbed him in and plunged away. In my pre-needle fear I forgot to do the sterile wiping bit. Will have to try and remember this tomorrow!

@ForestFlowerFairyhow are you feeling today after chemo yesterday? You ok?

@cannaecookrisotto How on earth is the CT wee sensation good?! I know we need to get our kicks where we can but that is an odd one 😜
I'm pleased you've no ill effects after yesterday.

Today I am tired, had no issue falling asleep at 9pm but was wide awake at 1am, gave in and got up at 2 and back to bed for half 5. Husband's alarm went off at 6 grrr!
I'm glad my sister drove me today as I suspect I'd have fallen asleep at the wheel. I do seem to be forgetting words today, but nothing nasty.
Day 2 done, 28 to go!

@FcukBreastCancer A 10 day wait for the CT results does seem a long time, but hopefully it won't delay the MDT results and is more a bells and whistles thing, I had the PET CT after the MDT meeting and thankfully it didn't show anything to change their plan so hopefully yours will be the same?

Glad you are both feeling ok so far.

That's what I'm thinking about CT is precautionary due to size and type of tumor. But hopefully it won't change overall plan. However, lab results will and I want to bloody know grrrr. I know they have them now and I'm feeling grumpy that I dont.

I think it was the weird warmth that I liked 😂. Was peculiar.

I’ve had no nausea which was my biggest fear. That may come in the next few days but for today I am grateful. I think the EC half of my treatment is going to be the nasty half. The nurses said as much yesterday but cross that bridge when I come to it.

I keep poking my lump to see if he’s shrinking. It’s 10cm so I’ll have tape measure out in a few days like an obsessed mad woman. My other compliant boob is like a little floppy dead squirrel after childbirth and subsequent milk absorption. So have one golf ball in a sock and a mutant lump breast on the other 🤦🏼‍♀️. At this point both tits can just fuck off (excuse my French).

Glad you are both feeling ok Ish

I cannot stop crying
It might be the lack of HRT, which they say I need to wait a few more weeks to restart.
And now have nerve pain, again, they say just a few more weeks to recover.
Between the hot flushes, the nightmares, lack of sleep, waiting for results, and ICU stay I am not good. Keep screaming in shock if my phone rings or something scares me.

I even scare myself sometimes.
I just want to feel normal again
Oddly the wounds and surgery pain aren’t issues, just everything else.

@OhNoItsAdeno I’m sorry you’re having a horrid time, is there somebody with you looking after you? It never rains, it pours doesn’t it.

Would it help to put your phone on a low vibrate or lower volume so it’s less of a loud shock? Could you get an emergency script for some Diazepam to tide you over the weekend?

I’m having some hot flushes too. I radiate on repeat.

I’m here if you want to talk anything through. I’m sorry you’re feeling scared and everything’s piling up on you. The mental side of it can be worse than anything physical thrown at us. Our heads can be our own worst enemy sometimes.

These feelings will pass. Maybe not today, or tomorrow but they will pass I promise ❤️. I have days where I’m teetering on the edge of what feels like sanity. I put on a brave face for everyone else and pretend I’m strong and doing ok then I go upstairs and offload everything into a notebook next to my bed. I slam the drawer and go back downstairs to brave family face. Some days the fear wins and I have to hide away.

Considering the shit sandwich we’ve been delivered, I think we wouldn’t be normal if we didn’t have these feelings of fear, and be scared. I have some diazepam from GP on hand for when I feel like my boats sinking. They take the edge off.

I’m here if you want to talk about anything, even the shite weather or what we’ve got planned for tea. I’m listening if you need an ear.