Cancer support thread 90 - still the best threads no one wants to be on

[LemonDrizzle10]

Last one filled up quickly!

@BreakfastClub80 @lucysmam
My dd2 used to have comedy slug eyebrows in year 8 a few years ago.. They May well return. I could see them almost wiggling
Got a collection eyebrow kit, and am going to let her loose on me. I like the stamp idea.
Round 2 tomorrow of the Docetaxel, hair shedding everywhere, short hairs which I confused for the cats.. briefly. And that horrid itchy feeling post hairdresser's!
I'm hating wearing anything on my head as feel too bloody hot, everyone says look fabulous.. they're being lovely! My head looks like a very wide acorn..all the brains it must be!
Do glad to hear @lucysmam little people making way back after their" adventure" hmm
I think I'm going to have to send DDS out to buy makeup, eyelashes do it online, I find these places too intimidating, hi ,low lighting, soo many brushes, kits here's to some fun..I suppose I'm going to have to blend into my head 😜

@TopOfTheCliff

Good grief, 8 rounds of EC chemo 😱 Having also had 6 before 😳

I've had 4 rounds of EC which were hell. Any more and I'd have been brain dead I reckon.

I had 18 Herceptin and Perjeta aka Phesgo aka trastuzumab and pertuzumab.

Paclitaxel / Abraxane weren't such zombifiying meds, but awful for neuropathy. Didn't manage many, I stopped.

I had 15 sessions radiotherapy on 5 areas.

1 x surgery

2 Zoledronic infusions, but 4 more to go.

This is for 1 breast cancer, but locally advanced (some people include that under early stage; others don't). Aggressive thing, hormone negative / Her2+++

@BreakfastClub80

Thanks! Good luck to you too. Let's compare notes how we get on with the acupuncture.

@SummerCycling I must confess I didn’t know there were different types of acupuncture. Mine is being done at the cancer hospital where I had my treatment. They have a clinic which offers evidence-based complementary therapies like exercise physiology, massage, yoga and reflexology. Apparently there is some evidence that reflexology benefits neuropathy as well but not as much as for acupuncture.

@TopOfTheCliff I hope you enjoyed your doona day, I am a big fan of them. Love the plans for the great recovery. My husband and I have started going to a different beach every Sunday morning to walk by the ocean and have breakfast together. It’s very restorative. I’m planning golf lessons with my friend and I’m trying to convince my husband to take up pickle ball with me so we can have a sport to play in our retirement. He’s resisting because in his heart he’s still a tennis player but his knees disagree.

@EachandEveryone that sounds rough. Iirc, I had dreadful trapped wind after chemo #1. Might it be 'just' that , do you think?

Oh my goodness @BreakfastClub80, I had no idea you could get human hair eyebrows! The mind boggles.

@nappybrained I've ordered most things online, with lashes though, I'd be tempted to go somewhere like Savers or Superdrug where they have a big selection, or just Primarni - they do some called "natural" that look alright for about £1.30, and pick some that appeal to you. It's quite hard to judge just how big they're going to be while they're on a screen.

I haven't worn anything on my head all the way through. Our admin lady did ask whether I would be doing so in school but I sort of shrugged & said no. I'm fine with answering questions from the children appropriately, & am crossing my fingers that it grows a bit more so I can maybe have it trimmed to look purposeful, before I go back...maybe 🤔

I do need to think about something for my poor, very cold, ears though! Ear-muffs are a no go. They're all too big with no hair! I'm going to be bloody miserable working in EY, with the amount of time we're outside, if my head's cold!

I meant to post a link to the stamp @nappybrained 🙈 this revolution one

Dd1 has just said, it actually looks ok once it's applied then gently brushed off wiped off with a tissue in my case , just enough of it left behind to give some definition. So I shall try that in the morning, then wash it off if I still feel it looks daft!

I'm back again with another random lash tip. Would help if I remembered everything at once, wouldn't it!

I was watching a lady with alopecia on tiktok apply lashes the other day - she uses glue on the lash band, and then a line of glue on her top lash line where I said to draw a line. You can get glue eyeliner pens that make this so much easier to do - just don't bother with the cheapy ones on ebay! Revolution do an alright one & I've bought another today but can't remember what brand it was. I'm braving a clear one this time!

@lucysmam I noticed an odd thing at the Look Good Feel Good session that has stuck with me and encouraged me to wear more makeup. Every one else at the session looked fantastic with the full make up on whereas I saw myself looking like a painted clown. They all thought I looked great though. So don’t be too quick to scrub off the brows but get an opinion from a trusted friend or DD. I get way more compliments now on how well I look when I bother to put on makeup so it must make a difference. Maybe my friends thought I would look like death warmed up 😂

I normally don't wear makeup and I liked it when I wore it once to an online meeting and the lady said you look different today, like refreshed and I said yes its makeup. 😂It was covering my panda eyes from lack of sleep.

Hi ladies,

Is it ok if I join? I'm so sorry to all of you going through this, I've only read some of the posts due to it being a long thread.

Just (well last Friday) been diagnosed with breast cancer. V V small chance that its pre-cancerous cause that doesn't present as a lump. I have an appointment on Wednesday to discuss my biopsy results and I'm guessing treatment. At the moment I'm bloody indignant and angry tbh. Obviously I'm grateful I can have treatment, relieved I got the lump checked out, very grateful to be under a very good hospital (Royal Marsden). BUT. I'm 48 (nearly 49), have two teenagers, lots to pay out for still I'm self-employed (have insurance and I know there are other benefits), lost both my parents to cancer (my Dad nearly a year ago). I haven't got time to slow down, theres so much I'm scared of. I'm not ready to move to this new phase of life where illness dominates, I struggle to accept help, hate not being in control, I know I'm no different from anybody else, as my Mum would have said). I just want to have my treatment it be gone and get back to normal. Know things will never be the same again, the days of health privilege are gone, if I get through this, there will always be the worry of it coming back. Wasn't ready for this yet.

Disclaimer, I'm really sorry if I've offended anybody, I'm aware how me me me this post says (working hard at keeping it together at home), my Sons dont know yet. People who know keep telling me to take it one day at a time. Going out for a drink with my bestie tonight, her Mum is very poorly, dying of cancer, I went to see her at the weekend after I'd just found out, it was a privilege to spend time with her. Need to be there for my bestie, she does know about my diagnosis. Find the one day at a time thing hard, I'm a planner. Haven't told work yet (I'm freelance), scared that once I'm better there will be someone else who's taken my work over who's better than me and that I will struggle to get work back. So jealous of whoever gets to do my work and its not even a career. Day at a time.

Sorry for the brain dump.

Hi @Octopus45 , welcome to the thread. These really are the best people, with a wealth of knowledge between them! Totally get where you're coming from with not having time to slow down. Don't apologise for the me me me post - it helps massively to get it down.

@TopOfTheCliff that's a good point about how we see ourselves Vs how other people see us. Dd1 agreed they were too dark with this particular powder, but the next shade up should be better.

@weegiemum I hope your appointment today goes alright.

I'm off for lunch with my friend and her ds, then coffee after, while he gets a haircut.

Have a good day everyone 🙂

Hi, I would say to simply email him; he's doing an alumni talk soon (October or Nov iirc) but you can access it by zoom too. You could ask if it's possible to attend that (I don't think you have to be an alumni.)

I do think it's more around devising the pathways as much as what is actually done. If you are happy for me to I can send you a pm with some more info.

Sorry to hear about your diagnosis @Octopus45, I felt a lot of anger at first for similar reasons.

I would definitely recommend seeing if you can access some counselling via macmillian.

Sorry to hear your new Ocytpus. I don't think anyone is ever ready for a cancer diagnosis especially when you have children. I was same age as you with 2 teenagers and it never crossed my mind would have breast cancer.

Hopefully yours will be pre cancer or very early stage when the treatment may well just be a one day surgery were they put your breast back same time and a week's radio and that treatment isn't too bad for disrupting your life apart from the worry. Try to distract yourself as much as possible with rubbish TV or music or activities, easier said than done. Its the chemo that's disruptive or the bigger surgeries were they reconstruct. But even then I had all those and was a year for most of it.

Hi @Octopus45, sorry you find yourself here. I was in a similar position to you when I was diagnosed with endometrial cancer last year. My dad had just died, my mum needed a lot of care, my daughter had dropped out of her A-levels, but was applying for a foundation course at university, my business was decimated during Covid, but I was starting to build it back up again. I had a hysterectomy, a lot of grief about treatment (my hospital got things wrong and I went to the RM for a second opinion) and then chemo, but other than three weeks off work after the hysterectomy I largely carried on as normal, the arguing with the hospital phase was more debilitating than the chemo!

It obviously wasn’t great, and I’m not where I would be if I hadn’t had it, but nearly a year after chemo I see it as a blip in my life. I am definitely not one of the “cancer was the best thing that happened to me” people, but it definitely did enable me to reevaluate my life and realise that my whole life was around looking after other people, and I rarely did anything for myself, and that has changed massively. I thought I was fairly healthy before, but I have paid much more attention to what I eat, and to exercise, and to relaxation, and not being so stressed all the time, which may also protect me against other health conditions in the future. But of course, I also have times when I rage and feel sorry for myself, it’s only normal and right at the beginning you’re just in shock, it does settle down later on. Fingers crossed for a simple procedure and recovery

@lucysmam Like you, am choosing not to cover my head/wear a wig. Instead, I will be fulfilling a long held desire to wear a balaclava when it gets cold(er)! Not one of the scary bank robber ones that cover most of the face, no, something that exposes the entire face and just covers the head, ears and neck. Am thinking a really lovely soft cashmere. I might bead it too.

Ooh @doublec I jokingly looked at balaclavas in Primark the other week. Beaded cashmere does sound luxurious rather than bank robber 🤣

Thank you for all your kind replies,

@weegiemum good luck with your appointment.

@stealthwalnut counselling might be a good idea if offered, but its something else I'll need to find time for.

@Silkiebunny thank you, I'm hoping it is early and that the treatment is as you say. Very true that noone is ever ready for a diagnosis.

@SierraSapphire I'm so sorry you had to go through so much getting a second opinion and everything. I'm hoping in a year's time this will have just been a blip for me. Agree about the lifestyle evaluation, I don't eat that healthily to be honest. I've also had a lot of stress the last few years and I'm quite a stressy person tbh. I know I need to change how I do things. Also hoping that it might strengthen our family unit. The stress of the last few years has taken its toll on our marriage, was just working on trying to fix things pre-diagnosis. Also hoping that it might change us for the better as a family unit. TBH me and my younger Son (hes 13) are permanently at loggerheads, has been like this for the past 18 months. Dont know how hes going to react.

Trying hard not to look like a victim if that makes sense. I dye my hair turquoise and did it again last night. Trying to wear nice clothes, if I get time between work I will go out and buy myself some foundation, my current one has run out. I want something that keeps me looking ok. I'm fair skinned, need to wear make up to feel like me.

Sending flowers to everyone, dont know how to do the emoji and hoping everyone has the best day they can.

Hey @Octopus45 sorry to hear about your diagnosis. If there's one time you can be 'me me me' it's now.

I have had a brief vacation from cancer land between finishing treatment and now, the time for the scans to see how well treatment has worked. I've been following the thread but haven't had much to post - I feel like I'm recovering from treatment as well as I can be and whilst I feel different, there are many many times I also feel 'normal'.

Had my MRI Monday and just waiting to go in for my pet scan at the hospital now, so it's all very much at the forefront of my mind. Keeping everything crossed that the scans come back clear, terrified that they don't and I have to have more treatment but trying to be realistic too.

Good luck @ClashCityRocker - around scan / appointment time is horrible. I completely agree with your advice for @Octopus45 though that now is the time to be me, me, me. I had to abandon my DM at times because it felt like a matter of life and death. On parenting, the best book I ever read (and possibly the best book I read full stop) was How to Talk So Kids Will Listen and Listen So Kids Will Talk - there's a teenage version too. I credit it with getting me and DD through the teenage years with no significant battles between us (though it was incredibly emotionally demanding, she was out of school for a year and a half before GCSEs with mental health issues and possibly undiagnosed ADHD and then dropped out of A levels, she's now studying nursing). Also, on fashion - DD said to me "You've got fashionable since you had cancer" - I felt with my hair falling out and my skin looking crap etc. there had to be something that looked polished about me!

@Octopus45 Sorry you find yourself here. This is precisely the place though to allow yourself to dump your list of fears, anger, and details of your situation. I am of a similar age (49), also have two teenage children and was treated for BC (currently being followed up and treated for consequences of the cancer treatment...but that's another story) at the Royal Marsden. I am also a long term planner and struggle with the idea of focusing on just one day at a time.

You are in 'good hands' as I kept being told at that hospital (and that is true as far as I can tell, despite the complications I've had). And, I presume your lump is very small if they are suggesting it might even be pre-cancer, so all should be 'doable'.

It is, that said, a life changing diagnosis and never something anyone is truly prepared for, whatever one's risk factors or however good the prognosis. If you are 'lucky' in this context, it will be a simple procedure and perhaps some radio and you will be able to continue with your life with very little interruption. Coming to terms with the diagnosis and the worry may take a bit more time.

In my case, treatment was over within 4 months of finding the lump (I am almost three weeks from final chemo) and I kind of feel like I was under-treated compared to others with the same starting point, so the fear has set in. My problems with my arm as a consequence of the lymph node biopsy keeps me however distracted (so focused on my arm that I sometimes forget other concerns...a bit like how being stepped on the foot may temporarily make you forget all else that was bothering you..).

Welcome @Octopus45 I am glad you found us. I saw your post on the General Health thread and was going to invite you over here. You may like to try out our Virtual Rage room which has full protective gear and lots of mismatched china and electronic goods to smash. I keep suggesting this to the nurses at the Breast Care Unit but they think I am joking! Anger is a very reasonable response to having your life derailed without your consent. It will take time to get used to it all. We always say the time waiting for a plan is the hardest and I remember feeling surprised when I was told this but it is true.

I have just set myself back a bit. I decided on a poached egg with avocado and tomato for brunch but dropped an egg and slipped on it wrenching my knee. Now sitting with a bag of frozen peas on my knee thinking toast would been better for my health! DH is in despair over how accident prone I am. I am a Bloody idiot!

Thanks for the good wishes everyone. I'm sitting here waiting for dh to pick me up (he even managed to leave work a little earlier than he'd planned), very nervous but just glad I'll know soon what's happening to me. I'll fill you in later.

And @Octopus45 you've landed in the right place, everyone here is so helpful!

@Octopus45 sorry you find yourself here, I’m quite new myself and totally get where you’re coming from. I haven’t had the rage myself but I do often wonder where it is! Strangely I have found some odd changes in relationships, with some becoming closer so I hope you do find some easing in your relationship with your youngest. I’m 52 with a DD14 and I feel resentful at times of this imposition in my life. Fingers crossed for you.

@ClashCityRocker fingers crossed for you too, I suspect the scans at the other end might be more stressful than at the start to be honest.

@lucysmam some great tips there, thank you.

@weegiemum best of luck x

I had my port put in this morning and thankfully it was straightforward. Feeling a bit weird and DH nearly passed out when he asked a question about my neck afterwards - he isn’t good with medical stuff so I haven’t explained it to him at all. He’s doing really well generally though and even my chemo nurse is getting used him and using language carefully (or I tell him to leave for a bit obviously 🙄).

Well, I have a bit of a plan.

The sample size wasn't big enough, so I've to go back sometime in the next two weeks to have a much bigger biopsy done, which will probably mean the whole lump gets taken out. Then they can have a look at the bit they're suspicious of.

The sample that was taken was grade 3 (not sure what that means??) on a scale of 1-5. So cells showing some changes but not yet malignant.

I'm going on holiday in November and they hope to have the biopsy and appointment done before that, the breast nurse was really nice about it.

So, still waiting, but a much more hopeful waiting now.

Thanks for all your support xx

@weegiemum About a decade ago, I had a similar result with a biopsy inasmuch as the results were indeterminate/c3, so they decided to take the entire thing out. No further anything was needed after that. Will keep everything crossed for you that it's the same outcome.

Never heard of grade 1-5, it's 1-3 with breast cancer cells -

Grade 1 – cancer cells that resemble normal cells and aren't growing rapidly
Grade 2 – cancer cells that don't look like normal cells and are growing faster than normal cells
Grade 3 – cancer cells that look abnormal and may grow or spread more aggressively

I think it's more likely that if they've mentioned 1-5, they're referring to the cytology -

C1 – inadequate sample
C2 –Benign
C3 – Atypical features, but still likely benign
C4 –Atypical features, probably malignant
C5 –Malignant