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

@cannaecookrisotto ... can see how much support they’ve brought us. It’s quiet at the moment but if anybody needs us, we’re here.
You're doing a good job - thanks 😊

Second chemotherapy today, mentally I'm like ooooh almost half way, only 4 more.... except there's 24 more radiotherapy and even I can't girl maths that to almost half way!

Just like last week the steroids are keeping me up, managed a couple of hours sleep between 10-1 and I'm now curled up on my chair listening to Sara Berallis with the medium fluffter on my lap and a cup of green tea.

I am delighted to hear you can feel a change @cannaecookrisotto - it must bring hope and faith in all you're doing.
I shouldn't laugh at the nits but I did spot a flea on the dog, she has super short white hair so very easy to see (and blame a cat for playing down rabbit holes) and did wonder what kind of mutant would form if they bit me!
Thankfully we de-flea monthly due to their passion for rabbit holes so they are nice and slow by the time you see one

Well done @cannaecookrisotto both on getting through chemotherapy and keeping the thread alive. I did the same when it was languishing.
My first lump shrank massively on FEC and by the time I finished chemo it had vanished completely away. Result! Let’s hope you do the same.

I finally have all results back and a plan.

CT clear
2nd biopsy on other side clear
HER2 negative
Lymph nodes look OK

So I will go for surgery then radiotherapy.

I am so pleased you have a plan @FcukBreastCancer
Are you waiting in dates now for surgery?

Yes I am. Appointment with surgeon next Friday

There’s definitely shrinkage!!! My left tit is actually wobbling again!! And I can grab actual boob fat!! I’m shocked but so relieved something is happening. Makes chemo feel tolerable, I’ve even started to look forward chemo Wednesdays because I feel like it’s the day I’m doing something about it.

@ForestFlowerFairyI was cackling away at the mutant fleas. You’ll come down tomorrow and it will be sat on your comfy chair drinking a cup of coffee 😂.

@TopOfTheCliff thanks Top, I’ve got another 22 rounds to go but so far I’ve been ok. By Sunday I feel quite fatigued and I’m sure it might accumulate over the weeks but for now I’m just enjoying the lack of side effects. I’ll worry about the EC and fatigue when it’s time. I think this thread is amazing, I went back and read through some previous threads and you can see the comfort and support that people get here. The fact it’s quiet is a good thing!!! But we’re here for when they need us ❤️.

@FcukBreastCancer I’m so glad you have results and a plan. How amazing does it feel to hear the words “CT clear”. I nearly floated off my chair. So chuffed for you. Bring on the treatment now, I found my MH picked right up once I got cracking with everything. The me today compared to the me 3 weeks ago is night and day (except post-letter gate the other day).

Starting to feel a bit tired this evening. The steroids have me wired all day (2 with breakfast and 2 with lunch) then by 8pm I’m cooked. Like a turkey. Gobble.

Today is a day to celebrate @FcukBreastCancer plan of action and @cannaecookrisotto wobbly boobies
Yay for a good news day

The steroids post chemo are the worst for my sleep but the nurse said I can have herbal sleeping tablets so I timed the steroids to have the last at 2pm today and will tuck myself up shortly.
So my win for the day is sleeping tablets!

@ForestFlowerFairy I take my first at 08:30 and second at 12:30. I’m crawling into bed with my Ovaltine by 8pm like my dear departed Nan.

Let us know how you get on with the herbals tomorrow. Can they not give you some of the good stuff? Bit of Diazepam? (I sound like a right junkie but when I had that awful week, just 2mg knocked me right out for bed). I’ve not had to use them except a one off last week where I nearly shot the postman.

I used to work in pharmacy back in the old days. Then I left and now work in the regulatory side, licences to import/export medicinal products, supply, procure, MHRA inspections, product licencing etc. Now I’m here, sucking on more drugs than Boots on a daily basis whilst offering consultancy around those drugs to my clients 😂. The irony.

I had an epiphany this evening and going to try and put into words here.

Pre-cancer diagnosis I was literally living the dream. Beautiful family, new baby, healthy children, I’ve not had so much as a cough in about 10 years, no financial worries, started a great business, things couldn’t have been going better. Yes there were life’s little niggles, DH moaning about his long suffering piles, me moaning that he wasn’t pulling his weight with housework but on the whole, I considered myself the twatting term “blessed” 🤮.

Then, like a wrecking ball 💥 - breast cancer diagnosis. I was that naive in my “perfect little bubble” that I allowed a 9cm tumour to invade my left breast. Yes the GP said it was blocked milk but I should have gone back much sooner. But “that won’t happen to me” mentality was there.

So the day I got my diagnosis, like for all of us here, it’s not only a horrific disease to be diagnosed with, but it’s also literally turning our worlds onto their heads. It’s like our North becoming South, the sky turning pink. It’s almost fucking unbelievable and I bet a lot of us (including me) had that initial thought of “have they made a mistake?”

So not only do we have the diagnosis to comprehend, our entire life and reality flips like a light switch with one sentence. And that’s a fucking trauma to us on its own. Because now, we feel like we no longer live in this safe bubble, anything is possible. So then the fear sets in. The CT scan. I was convinced mine had metastasised, because why not? Anything can happen now. Then I was convinced I wouldn’t respond to chemo and it would attach to my chest wall or my skin.

But slowly, I am starting to realise that just because I have received one massive shit sandwich, that doesn’t mean that every sandwich is going to taste like shite. My CT was clear! My tumour is responding! And most of all, I’m just very thankful that this is happening to me and not one of my kids.

And I think once we get our results, our treatment plans, and get stuck in to the routine of re-calibrating our perception on reality and slowly learning that not every result is a bad one, we begin to feel that hope again. We regain some control. The Earth slowly tilts back to North. Not every day is a shit day. Today I am thankful that I can feel some relief from my tumour shrinking and I’m not suffering terrible chemo side effects. Today that is enough. And this brings me a lot of peace (as cheesy as that sounds).

I hope everyone here finds peace too in upcoming times, and for any new people, be kind to yourself. Those first weeks are quite literally mental hell but you will find your footing again ❤️.

@cannaecookrisotto I wish I had your optimism but honestly it's been a really crap few years.
I am TRYING to tell myself the positives, I sold my half of my company in 2021 and went down to 4 days a week, which has transformed mine and my husband's life as he also has his own company and we'd be working so many hours and always stressed so had this happened a few years back I know it would have been so much harder....but between then and now I was also caring for a grandmother with dementia, my son caused a serious car accident and we're still waiting 18 months on to find out if he'll be prosecuted. I have 2 adult children (19 and 21) their Dad had a serious accident in 2020 which lead to a worsening of his mental health and multiple suicide attempts, he died about a month ago, funeral was the 15th September this year so trying to support both kids whilst dealing with my cancer as well has been tough.
Throw in the fertility issues, honestly my DH and I kept delaying trying because my two were going through so much with their Dad, by the time we said it's our time now, the losses and now failed fertility preservation I am seriously struggling to count my blessings. Sorry for the dumping of crap
I feel this is just yet another shitty thing and I'm at my limit of shitty things.
Perhaps when less tired/emotional we can start thinking about the future and changes we need to build a more positive future

@ForestFlowerFairy no need to apologise for the dumping of crap, dump it out!! Better out than in. It does indeed sound like a massively shit number of years with some absolute wankery thrown at you, and this now, the cherry of wankery at the top of the shit-tiered cake.

I’m a carer for my step-dad. Long story but he was diagnosed with Huntingtons Disease back in 2021 and it has a 50% change of passing to his kids. I’m obv ok because he’s not my biological dad but my sister (22) and his other son (14 but different mum to my sister) are both at risk. The BBC news story reporting on them treating symptoms was a big deal for us. It does take its toll having to be mentally there for someone else and the administration and physical bit that comes with caring. My heart goes out to you Flower. I’ve had to take a step back from it and ask my sister to step in because I have my own shit going on for a bit.

You’ve got some serious challenges going on. Even without the cherry on top of wankery, that’s a lot for anyone to deal with. I hope you’re getting so much support from those around you ❤️

I think my taste buds are being affected. I’ve just ate a McChicken Sandwhich from McDonald’s and it tasted like absolute shite. McDonald’s is foul at the best of times but it was an emergency starving situation and I now will forever hate McChicken Sandwhiches 🤮.

Urgh to the changing taste buds, whilst not the biggest fan of McDonald's I'd be miffed if this ruined a double sausage and egg m muffin meal, perhaps I best avoid so I can enjoy the greasy nastiness afterwards!
I've started getting sores in my mouth so suspect I won't be eating much longer - so I've thrown in some lemon Gu cheesecake and key lime pie cheesecake to the shopping basket on the way home from the hospital today.

I've curled up on the sofa, fire lit and trying to get my head straight. You are right about the wankery and I applaud the use of wankery to this entire situation.
I'm usually the one who plans, if there's a plan, there's no problem only a solution. Everyone comes to me for solutions, talking and dealing with emotions is not my strength.
I'm going to take the weekend to rest, enjoy NOT having a 2.5 hour round trip for Saturday and Sunday and prepare for my sister in law arriving Monday to do next week's chauffeuring. No family live near by so I've been very lucky to have the 6 weeks covered by people coming to stay purely to drive me. I shall focus on the plans, each mini to do list each day.
I shall do my best to be more cheery and making jokes next week

Wankery is a good word. It’s a big pile of wankery. But like all wanks, they come to an end eventually.

Sofa and fire sound lovely. That is my idea of bliss. Weekend of rest sounds good too, my dad’s taking my kids out on Sunday and I have full intention of going into couch hibernation. I might even ban DH from the living room so I don’t even have to open my mouth 😂.

If you’re struggling to get food in, I’ve found those Huel milkshake meal replacements really easy to get down (compared to some of their counterparts). I mean, I wouldn’t go out of my way to sit and relish a bottle for fun, but in a pinch of getting in some nutrients they’re ok. I can’t even be bothered eating sometimes, it feels like a huge chore so I do the lazy option of a meal drink whatsit. I only learnt of their existence by a kind lady drinking one next to me during chemo last week. I’ve been using Benzyl mouthwash but I keep forgetting. I’m being naughty. Says up to four times a day but I do a swish in the morning and night. I need to remember because I’m quite fond of my tastebuds.

Excellent you’ve got family helping with the chauffeuring! One less mental load for you.

Im usually the problem solver too. I find it weird being “looked after” but I think I could get used to it. My mums husband does batch cooking and brings it round (dad number 3, he’s a good egg 😂). My eldest has started calling him Grandad Ramsey. He made a madras the other day but I gave that one a swerve. My trumps since starting treatment are already dire and I’m sure I made my baby cry with one yesterday. DH now calls me Satan Arse. So curry is a no from me lest we wake up in the night choking with the CO2 monitors going wild from my chemo gasses.

No need to be cheerful and make jokes if you don’t feel like it! That’s one of the only less wankery parts about being in our situation. You have a perfectly good excuse to take “the face” off. I’ve not got much of a filter at the best of times but I have found my tolerance for bullshit to be even less so, and find it quite easy at the moment to say “I’m not in the mood for fuckery” as and when it’s required.

I cancelled a meeting yesterday and just put in the notes “I don’t have headspace today, please can we reschedule for next week” and didn’t give it a second thought. Whereas tomorrow I might be the cheery light version of myself and feel like I could have 10 meetings. But don’t put that pressure on yourself to be cheery if you don’t feel like it. If you do then great! At this moment, you are the most important person in all of this wankery, your kids (even as adults) need their mum and that means you have to do what it takes to get this shit done. In one piece. This is a big deal what’s happening to us and if that means you scream into the sofa then do it. Throw a plate in the garden (then immediately clean it up to protect cat paws). Do what you need to do for you.

Take each day as it comes, let the feelings in and out as and when. This is the only way I’m managing to cope. I’m not even thinking ahead to next week, I’m just getting through each day and as long as I’m through it in one piece I’m taking as a win.

You’ve got this @ForestFlowerFairy. Sending big hugs and bollocks to the unmumsnetty.

Morning all, may I join the club nobody wants to be in?

I read through the thread last night but didn't have the energy to post.

My briefish background: all fine and normal until August when my breathing started to get worse and worse. Multiple trips to GP/A&E referrals, respiratory diagnostics - CT scans and X rays - through August. No diagnosis.

A&E consultant noticed a small run of lymph nodes near my clavicle which, although not enlarged were in an odd location. I had a biopsy and it turned out to be breast cancer. Off to have a mammograms and US and on the 2 week pathway. Unfortunately my breathing wasn't getting any better so by the time I got to the meeting with the breast clinic I was using a wheelchair and could barely walk three paces.

At this point they started taking me seriously and back to A&E, admitted to urgent care and then to oncology. Diagnosed with secondary breast cancer and lymphangitis. The lymphangitis caused the breathing issues as the cancer gets into the lymphatic system in the lungs. Chemo within 24 hours - no chance of a cold cap option.

Unfortunately they told me about the lymphangitis in A&E as though I already knew. Google was not my friend here as it said that fewer than 30% of people with lymphangitis live 5 years. Hopefully, the prompt treatment will help me and I haven't been near google since!

I was an inpatient for 10 days and had my first two rounds of weekly Paclitaxel in hospital. The chemo has really helped with my breathing (thank goodness!) Discharged last week and third round of chemo as an out patient yesterday.

So that's me at the moment - in a state of denial and just trying to take things slowly (which is really not me!) and one day at a time.

My breast tumour is actually really very minor compared to others - grade 2 - 2.5cm, HER2, ER8 PR5, ductal, CISH negative. It just seems to have wasted no time in spreading.

I'm aware this is an essay - my "origin story" as my teenage son would describe it . So I'll post again soon and keep up to date your updates..

Wishing you all a peaceful and relaxing weekend.

@Ventress it always sucks when there's a new member because it means you're also on this shitty path, although maybe that should be wankery path as inspired by @cannaecookrisotto when I was having a blue moment
You are if course exceptionally welcome and I'm pleased your breathing is getting better - it always amazes me when I hear people's stories and the level things get to before doctors really start taking things seriously.

I'm having a super tired day today, no energy to do anything and for the first time swallowing food hurt this morning so a sofa day with fire and blankets is in order. I do hope you have a very restful day tomorrow @cannaecookrisotto with non fart inducing food provided!

I do have the Fresubin shakes which I can pop into my feeding tube if needed but I'm doing my best to eat whilst I still can, I've managed to maintain weight this last 2 weeks, yay!

@Ventress what an absolute fucking bollock you’ve had thrown at you and I’m sorry you find yourself here but you’re in good company. Firstly, Google is not your friend, get the info from your Oncology team. I’m usually a Googler of everything but I haven’t dared type in anything to do with my type of BC (TNBC). I just know it’s aggressive and “large unfortunately” according to my oncologist who looked me in the eyeballs very seriously whilst saying this. I was like “cheerful thanks”.

Sounds like once they’ve understood what’s happening with you, they’ve not messed around getting you started. I’m on Pax too and have felt significant improvement over 2 weeks, glad to hear it’s helping you’re breathing too! I chose to cold cap but tbh it will be a miracle if I get to the end of treatment having continued with it. It adds 90 minutes to the time spent in there and it’s pissing me off already! Also fighting a losing battle against a 6 month old who yanks a good handful out every chance she gets.

@ForestFlowerFairy yay for weight maintenance! I lost 10kg since Baby was born and before I found out about twat lump I was really pleased about it. Thought the baby weight was just magically shedding. Went from 70kg down to now 59kg. So now trying to chuck a bit back on, get some chub reserves for chemo.

Sofa day sounds perfection, how’s the comfy chair? Has the big cat fluff claimed it from you??

Thanks for the welcome @ForestFlowerFairy and @cannaecookrisotto

I hope you are having a relaxing day under the blankets @ForestFlowerFairy and have managed to get some food inside you which hasn't hurt to eat.

Yes, wankery path is a good term for it. Arsing wank all round.

Google is a total wanker too. I have given it a very wide berth since and banned my family from googling too. Not sure I have that level of authority but nobody has dared argue with the sick lady (yet anyway).

The cold cap looks like medieval torture @cannaecookrisotto I hope it works for you. I haven't had any hair loss yet despite my consultant saying it was almost certain I would start to notice loss almost immediately. Not even chemo wants my shitty hair apparently! I'm glad you are feeling such an improvement on Pax. I've not had any big side effects yet - wobbly eyes and some properly teenage spots but nothing nasty. I hope you have a good relaxing day tomorrow.

My lovely sister-in-law sent me a food parcel of a load of freezer meals - proper comfort food like hot pots, cottage pies, lasagne etc. DH is doing his best but he's more of a "think about tea 5 minutes before DS needs to eat" type of cook. I've been fit for nothing for that last weeks but, fingers crossed, I'll be able to help out more around the house. DH has been doing everything around the house which has added to the guilt.

Chair has been relatively safe from the many floofters, though I suspect that's because it's a nice sunny day so they are enjoying the outside.

I've also managed a small potter in the garden after my morning of rest, quick trip to the nursery and I've hopefully got some colour to look out on in the coming weeks, hopefully it rains as the solar watering system is really not effective in September!
May aim to top up the living wall and add some planters near the bedroom over the coming weeks. I'm not ready to embrace Christmas yet, but a few pops of colour will be nice. We have a jungle garden so usually it's all shades of green, which whilst calming I think I'd like some brightness.

Your sister in law sounds awesome @Ventress mine is coming to stay for a week Monday but her husband is usually the cook, I suspect she's like my husband who is more of a warming things in the oven kinda cook! She is however driving me over 2 hours a day back and fore the hospital as well as staying here for the week (lives 3 hours away) so her lack of cooking is in no way a disappointment

@Ventress Welcome to the crazy world of Chemo! By heck you've had a sudden, unexpected bad time.

...some properly teenage spots - be careful of these - you might need to keep out of the sunlight - I had a bad time when I was having Panitumumab - I ended up looking like 'the creature from the black lagoon' - 'no change there' said my family.

Are you now receiving regular Chemotherapy?

Is your sister-in-law taking orders? I like spaghetti bolognese - good luck for the future.

I have never posted on mumsnet, this week I was at breast clinic, I have had mammogram and ultrasound and biopsies for two lumps and also biopsy for lymph nodes.
I am terrified. I have been told it will be three to four weeks before I get my plan of treatment and its taken me most of the week to recover from the biopsies. I am fine, then I am crying, I am tired because I cant sleep on one side and I now have earache and cold sore because I am run down. Its just torture waiting for whats next and how long will it all take and when will it be over. Help

@cantbelieveIamhere take a deep breath innnn and let it out.

You will be in good company here, although I’m sorry to welcome you. Have they given you a wait time for biopsy results?

Right now, you’re in the deepest part of the hole. I was you at the beginning of this month. Got diagnosed on 1st September and it is like the world stops turning. BUT, since getting my plan of action and starting treatment, my feet are slowly touching the floor again. You’re in the worst bit right now but whilst I can’t promise the tears will stop, they will slow.

First things first, wait for the biopsy results. If the results do indeed come back as positive, things will move very quickly, they’ll get you scanned and a plan put in place to start treatment ASAP.

I suffered terribly after my biopsies, it said on the internet “some mild-discomfort that can be managed with analgesics purchased from a pharmacy”. Lying bastards 😂. I had to get my stash of codeine out of the cupboard.

This feeling of terror you’re feeling right now will ease I promise. This initial bit of “not knowing” is the worst.

Was it a routine mammogram or did you find a lump and go to the GP? Tell us a bit about you if you feel comfortable.

I’m 34, have 2 girls (6 months and 8 year old), have Triple Negative BC, 9cm, stage 3. Lymph Node involvement. The GP was telling me it was a blocked milk duct since May. Apparently not!

Anyhow, I’ve since had 2 rounds of chemo (chemo first for my specific type) and I can feel the fucker shrinking already, so they do know what they are doing these Oncologists :). The first week after diagnosis I was in full existential crisis. Felt like I was living with a gun to my head as dramatic as that sounds. I had lots of tests in the first two weeks, CT, MRI, Mammograms, more ultrasounds and they confirmed it hadn’t spread. Thank fuck. But due to it being large and a high grade (TNBC is usually grade 3 so very aggressive) it’s stage 3. They’re aiming to cure. At this point, all I can do is stay on this hamster wheel of shite and do as I’m told. I just turn up for the appointments and consider my job done.

Stay off the internet, unless it’s safe websites like MacMillan, breast cancer now. Don’t go down rabbit holes of statistics, they’re out of date anyway. If I was looking at stats on mine I would be carking it in 3 weeks.

@Ventressamen for lovely SIL and food parcels of comfort! I love comfort food. My DH is shit in the kitchen, he can make fabulous chicken wings but that’s it. Ive banned him from cooking chicken wings because if they’re ruined for me by gammy chemo mouth I’ll be horrified.

Don’t you dare feel guilt for not helping around the house woman! Your only job at the moment is looking after yourself and letting your body do what it needs to do. I’ve declared this in my house and don’t feel a tad of guilt. I’m also working as and when I can (I’m self-employed) and still paying the bills along with looking after a 6 month old, whilst managing chemo and its joys so the housework can go fuck itself frankly. If he needs clean undies he knows where the washing machine is. Yours sounds like a good’un. I’m sure he doesn’t for a moment resent helping around the house considering the circumstances ❤️.

@ForestFlowerFairy your garden sounds lovely, is that what inspired your username? I’m imagining you floating round a planty secret garden like a fairy!

@DanFmDorking , lovely to hear from you sir! (You are a sir yes?) how’s the tiredness train this week? I like spaghetti Bol too, although carbonara comes a close second. Jacket potato with cheese and beans for me tonight so god help DH with the beans… 💨

@cantbelieveIamhere another sad welcome today, it sounds insane to say but you really are at the worst stage, not knowing and being in limbo really sucks. It all sucks, but at least I have a plan and a target and you will too if the biopsies come back positive.

I have head and neck cancer that's spread to my lymph glands in my neck so treatment is different but the emotions, uncertainty and tears are all there.
I'm not particularly great at talking, im finding it very hard to verbalise what's going on in my head but this forum is helping so please do come and share whatever you need.

@cannaecookrisotto I would say more jungle than forest but I have wedged far too many trees into a small space - it almost doesn't matter where you sit you can't see out. I do have a habit lately of just being out there touching the ground and breathing, for a person who is usually very practical it's a bit woo but very grounding. Most people's Instagram is full of holidays and nice house pictures, mine is all about the plants and the occasional cat!

@ForestFlowerFairy it doesn’t sound woo at all.

I have a “witchy” auntie who comes round on a Thursday (day after chemo day) with a bag full of crystals for some “mindfulness healing”. All this entails is just some gentle visual meditation, breathing exercises and a good talking session, because I’ll take all the help I can at the moment. I always feel nice and relaxed afterwards so whether it works or not it makes me feel peaceful = a win! So you touch that ground and breathe. Do whatever you need to do.

I’ve always been a believer in the woo, put it on the back burner when the kids started coming along but it’s something that’s bringing me a lot of comfort at the moment. I find a lot of comfort in earthy type things, I also have some quartz that fit nicely in each hand and when I’m starting to feel really anxious I roll it around in my hands. Sounds absolutely batshit but it calms me down so I’m rolling with it 😂. To the outside world, I’m also a very practical person and my jobs quite stern and data driven. So it’s like my secret crazy.

I don’t have Instagram. Or TikTok. I have FB but never post. I have nothing against them, just never really jumped on the train. But if I did, it would also be pictures of my cats. And possibly one or two of the bearded dragon (but I’m not allowed to touch him anymore according to the Oncologist due to risk of Salmonella). Poor Richard now has cuddles and watches TV with DH.

@FcukBreastCancer how are you getting on?

Sorry to welcome newbies here. We are here for your questions and rants.

Thanks for asking how I am. Won a big award at work last night. One advantage to treatment delays is that I could make the event. So, definitely keeping busy. As much as possible