How's everyone doing.?

[Pam75]

Emily and emj60 (emma) where are you both up to treatment wise I know we all joined this thread at similar time..I'm lost now with everything it's so busy on here

[EJM60]

Good to see you Emma - like the analogy of the cost kitchen and mug of tea!!   

Ali - I think the idea of certain times classed as 'cancer free' is a really good one.  I do wonder if I'm offloading too much to my oh about things.  I know that it's all part of the 'in sickness and in health' but perhaps the poor man needs a break. I seem to have taken a step backwards at the moment and every waking minute is filled with thoughts about my diagnosis etc.  In fact I had a melt down during 24 hours In A and E because one of the nurses looked just like the original BC nurse who held my hand when I was told I had cancer. 

Susan - thank you for the loan of the pants - might be a bit of a squeeze for strudel and I to fit, but we'd keep warm and cosy together!  

Love to all

Jane x

[Jules1]

Hi - not been on for a few days - now had the CT scan, a visit to the Chemo Centre and the breast marker thing put in. The locum oncologist was a bit abrupt but my specialist nurse was fab! Have my next visit (for intro and video etc) on 23rd Jan and 1st chemo that week.

A friend told me to look up tumeric - what does everyone think? There are tumeric capsules and some evidence that they are good for all sorts of stuff including cancer. Is this something I should consider?

I have been using a soap with no sodium laurel sulphate all last year (not connected to my cancer) but it is wonderful as my skin is no longer dry. My hair is also thicker and less fly away (at the moment, I have some!). It's sold by onevillage.co.uk and I use it instead of shampoo and shower gel 9and don't need conditioner). For women going through radiotherapy this may help as SLS are not recommended. xxxxxxxxxxxxxxxx

[Jo C]

Great news Ali xx I might raise a glass to you later.

[Sallyann43]

Woo hoo ali.. fabulous news!! I will eat a creme egg if you don't mind instead of the glass of champagne to celebrate 😂😂😂😂 not fond of champers xxx

[Silverlady]

Ali that is wonderful news. I will join you for a glass of virtual champagne.

I was expecting spread, due to the cancer being so large and aggressive, I think my consultant did as well, which is why is sent me for a CT scan.

So I can totally understand the joy you are feeling right now.

I don't know what stage I am - I haven't asked.

I'm so pleased for you.

Susan

[Em 67]

Ali that is such good news. A tough journey ahead but with your worst fears alleviated. The lead up to today must have been horrendous. Enjoy your well deserved glass of champagne - I might join you from a considerable distance in Brum and raise a glass to you!!! Emma xx

[Strudel]

Ali, that's the most wonderful news. I really don't have the words to properly convey how relieved I am for you x

[ali1961]

Hi everyone,

So I have actual news. Phoned the BCN about my CT scan and whilst it's confirmed there is node involvement (we didn't know before) it has also confirmed no spread elsewhere. She was really nice and went through each bit, lungs, liver, bowels and bones. All clear. I know it might have seemed overly pessimistic to be expecting mets, but I sort of was. Partly because I've had unexplained pain, partly because my onc was concerned about it and partly because of my type (of cancer, not personality). So, while I've been trying to get on with life, I'd also been thinking about what it would mean.

Anyway, I'm obviously really relieved. They haven't formally staged it yet, but I'll either be stage 2c or 3 depending on the number of nodes involved. They're going to discuss that with me at the next clinic pre-chemo 2. But honestly, all I can think is that at least I've got the chance to knock it back completely. Lots of treament to go through, she confirmed 18 cycles of Herceptin planned, but I'm breathing again.

I know it's crap for others waiting, but hope you can all join me in a glass of virtual champagne. Unless you live in Greenwich, in which case come on over.

Ali x

[Emily T]

Morning all, being norty and posting at work because I felt the need to check in.

Zena hun, please don't go, this thread is about us all supporting each other. Your rant is fine but we do need to celebrate everyones positives and support those who are having a touch time too.

Silver, I'm waiting Oncologist appointment. I'm HER2- got that result Tuesday, so sample been sent for Oncotype.

I tried ringing the couselling people through work but they were a bit crap, I got a call back and she wasn't really getting what I wanted and garbled on about phone counselling and just ringing as and when I needed to talk. I don;t know, think I'll leave it for the moment.

Hope everyone is ok, I have read through and I am with all of you xxxxxxxxxxxxxxxxxxxxx

[Em 67]

Good morning ladies. Yesterday I dusted off my tough pants - I think even a few moths flew out when I picked them up!! Today they are firmly in place and I'm ready to have a better day. I need to stop dripping about and you have inspired me (as usual) to get a hold of myself.

I have tried to catch up with posts and see there has been a lot going on. This thread has always been a place where I feel I can say it how it really is, have a good old rant but also express any positives and always feel so glad for anyone else's better news (even if I'm going through a bad bit myself). This is all so scary for all of us, with so much uncertainty. I hate to think of anyone feeling they have to leave the thread unless they want to as we're such a warm, tolerant bunch and have to feel free to say what we need to. Having been a bit out of it over the last couple of weeks, it is the first place I've come back to on the site - and it feels like coming back into a nice cosy kitchen with a big cup of tea when it is sooo cold outside!! 

completely relate to the OH issues - it's like oh are you still talking about your BC I thought we'd done that!! To be fair to mine (he has been brilliant) it is only some of the time but I do sometimes feel that everyone is just really bored of it now! Susan I laughed out loud at your bit about him then talking about his ailments!! I do get a bit irritated by people's need to constantly witter on about their trivial complaints!! I'm sure they are very annoying for them but really??!!!

good luck to anyone facing particular challenges today, including anyone going to work. I have given in and got signed off now until after my op and feel a million times better for the decision. Meeting HR director today ( who is also a good friend) and that feels close enough to work at the moment.

no snow here yet - would love a bit at the weekend but not enough to interfere with anyone's treatment or trips to hospital xxx

[ali1961]

Morning everyone,

Hi, Mary. As Strudel said it's unimaginable and must feel like you got a pretty bum deal. But really glad that it's good news.

Zena, hope you stay around. I completely understand how you feel, but don't risk losing the good things from being here, because there are some tough moments too. When I found I was ER-/HER+, I was a bit jealous of others. (The bog-standards (BS) as I believe they are now officially known!). But it's not a zero sum game. What I mean by that is, someone else getting a good outcome doesn't mean you or I are more likely to get a bad one. You could even think about it this way. the more people have BS cancer, with no node involvment, the more resources are left for those of us who don't! Ok, I agree that's a weird way of thinking, and I'm slightly joking, but it might help.

Silver, that actually made me laugh, although it's also really annoying. Yup, competitive aches and worse. Like an illness Top Trumps x

Strudel, that's pretty crap tbh. Initialky I'd imagined that OHs would fall into one of two categories. Roughly supportive or rubbish.  Which is clearly over-simplistic and going to miss lots of up and downs as well as different starting points. My advice would be to address it head on, but in a fairly light way. If you ignore it, then it's accepting it. But calling him on it might lead to resentment. Maybe at some point say, "It's so all encompassing at the moment, I'm even boring myself at points."  He probably isn't aware that he's doing it. I'm going to designate a daily Cancer free hour as a thing in our house. No discussion of treatment, the future, fears etc.  And then see if I can go for Cancer free Saturdays. Not that I'll actually be cancer free, obviously, but more as a way of getting both of us some headspace. By definition the rest of the time is not cancer free, so it's not really cramping time for my worries/fears/ need to talk. It may not work for everyone, but it feels like I need to do something. This is a long haul for me (& many others) so I don't feel I can risk drifting through. 

Probably should say I'm not qualified to give relationship advice at all. But I am older (55) and I got married at 17. So I've had a long stretch of working at it. We did also lay down one agreed ground rule in our house. No matter what is the current popular mantra; what celebrities say; or what seems selfish, this is not worse for him than for me. If it turns out well, I have this in my life for ever. If it turns out badly, he get some to see the currently not born grandchildren grow up. It is worse for me. So when he gets bored, or sad, or resentful, he has to remember that. 

So, I cut my hair yesterday and am thinking of changing career and becoming a hairdresser. As long as I can find enough clients who want short choppy bobs, it'll work fine. Seriously I think I may have wasted thousands of pounds over 40 years, it looks pretty good. Though I think I'll be clipping it on Sunday, so there's a short window of conceit. 

Have a a good day everyone. No idea what people are doing, sorry. But good luck for treatments/results everything else.

Ali x

[Silverlady]

Bloody hell Strudel - my pants are elasticated & there's plenty of room for you and Jane.

I don't mention my aches, earache, sore nipple, seroma, **bleep** great big mx scar - cause he starts telling me about his illnesses. 😂😂

[Strudel]

Good point Helena, may well have been the wrong word. Anyway, hope Zena that you'll stick around X

Marydan - yay! I hope you continue to improve. I can't even imagine what it's like for you to have both BC and MS. You are clearly made of some sort of coping steel.

Jane, I don't have the pants. For the first time yesterday I got the impression that my OH is bored of me having cancer and being afraid of it. He said one thing in front of the onc that really upset me. We were talking about the side effects of tamoxifen, specifically a dry cough. I said "I have one of those already" (and yes my inner demons are worried about it) and the OH rolled his eyes and said words to the effect that I have everything going now. In front a man he could tell I really didn't like. Er, no. I have had a persistent back pain for nearly a year and a dry cough since Christmas. I really felt angry and have done again today when he audibly groaned when I said I was worried about the bone scan they've ordered. He has been amazing up till now. I guess that two months is enough. So Jane, an enormous hug as apparently we can only be frightened for two months x

[Silverlady]

Marydan - good news for you today.

Zena - There's no need for you to leave, as Strudel & the other ladies have said, we celebrate everyone's good news. I had an enlarged lymph node which they thought had cancer in, but I was so happy when the other ladies were clear. Unbelievably, mine was clear, but as you know having lymph node involvement or not does not guarantee it hasn't spread through the vascular system as my consultant told me 5 mins after telling me my node was clear. So had to wait another scary week for my ct scan results.

It's a horrible time for everyone- I'm starting to get nervous about my chemo as it get nearer.

[Silverlady]

Jane - mine are super kryptonite for you tonight. Big hugs & stop reading that report.

[ann-m]

...oh, & so glad about your results, Marydan x

[ann-m]

hi zena,
It's a bitch going through this & anyone of us can rant if needed - its an entitlement on here!
No matter what we're going through, we all have phases of strong feelings when going through this & can need to rant as well as having broad shoulders for others at other times. It's not awkward at all.
hugs
ann x

[EJM60]

Sounds good news about your ms Marydan.  My friend had a relapse last October, having been stable for many years, and that was down to work stress.  She is improving again, but waiting for MRI results.

Zena - you don't need to go anywhere. We're a diverse bunch of ladies all with different diagnoses and at different stages, but we all support each other through shared experience of this horrible disease.

Strudel - well done on working today. I popped in to school on Monday for a couple of hours and still not recovered.  Don't know what's up this week but I feel really unsettled and anxious - keep worrying that my pathology results are wrong etc, and I think I'm driving my oh mad - he has been so patient through all of this but he told me tonight that I just need to get on with it and move forward - there, my eyes are leaking again at what I perceived as his total lack of understanding.  I need to borrow the superhero pants - who's got them at the moment?

jane x

[Strudel]

Oh Zena,

You didn't offend me and there's certainly no need to leave this thread if you don't want to. We're all frightened, whatever stage we're at, as no nodes is no guarantee of anything as my delightful (grr) onc kept telling me.

I was basically only pointing out that we can't be expected not to celebrate good news in case it upsets someone else, it's not really reasonable I don't think because we're all individuals with different situations; we all need support and to share our victories if we get some.

X

[Jo C]

Zena, don't feel bad or apologise for being scared. It's perfectly understandable. I have 5 daughters and lymph nodes involved too. I completely understand. I'm sure that nobody was offended and there isn't any reason for you to leave (unless you want to).

Big hugs.

Jo xx

[zena75]

Anyway I leave this thread it's ok . I don't want to make anyone feel awkward.. thank you ladies for all the support xx

[zena75]

Dear strudel
I didn't mean to offend you or anyone .. it's just hard hearing about nodes that's all, as I know how serious it is.
I had no idea that there was a small group of you that started on here together with similar diagnosis's.
I thought it was a thread for newly diagnosed and it said how's everybody doing.
Just wanted to rant as I'm scared I have 3 kids under 10 and my mum died when I was 7 .. it's not a unique story I know . But worried I will leave them like I was left ..
apologies to anyone I upset and in no way meant no one should celebrate good results.
Zena xx

[Jo C]

Mary, great news about your brain scan. I think you have the right attitude about your spinal scans. Onwards and upwards xxx

[marydan]

Hello to all my lovely friends,

Well have my brain and spinal mri results back for the multiple sclerosis.

The brain scan shows no new lesions/progression which is great but there are a couple of lesions on the spine (thoracic and cervical area of spine) which the neuro says is in keeping with the symptoms I had during the scary b.c journey. My first ever relapse.

The neurologist did say as I have never has a spinal mri before there is nothing to compare it with therefore they could be old ones.

My way of dealing with it is to tell myself they have been there for ages and its onwards and upwards.

The fact I recovered so well from the relapse and the fact I cannot take any meds for the m.s due to the tamoxifen (oncologist had said) there really is no point in worrying now.

My lower back still aches but as I had the full spine mri I am putting it to the back of my head as best I can. Lots and Lots of love to you all, you are all truly an inspiration . Mary xxxx

[Silverlady]

Hahaha - LMFAO Strudel - very good 😂😂😂😂😂

[Strudel]

Susan,

My seroma stopped returning after the third draining so worth bearing in mind?

I also work with robotic demolition machines; mind you at my place of work we just call them senior managers. 😉

[Silverlady]

Hi Strudel,

I always love reading your posts.

My seroma has come back and I now look like I have had a breast reconstruction again - but the hospital said that they would only be able to drain it another 2 times, so I'm going to leave it and let it absorb back into my body, it's uncomfortable but bearable.

My other boob hurts right near the nipple, I'm not sure if it is period pains, as I was told to come off my pill way back in November, but I haven't had a period, but I'm getting really bad stomach pains.  

I'm on my third day back to work - it's so lovely, just carrying on pretending nothing has happened.  I work with robotic demolition machines and love going into work. I'm left to do what I want, when I want, just as long as everything gets done, everyone is happy.

My new hat for my bald head arrived today and the onicolife drops for my nails - still doesn't seem real though.

Hugs to you and everyone else.

Susan

[Strudel]

Evening all,

Firstly I hope it snows in Ali's garden so that she can have a snowman. Other than that I'm with Jane, no snow please! I would be so screwed getting to the hospital from my shack in the sticks.

Silver, my lovely - has that seroma come back? To answer your question it's ongoing for me. Met the oncologist (well two actually) yesterday. Their plan for me is just radiotherapy and tamoxifen. We are in heated discussion about their refusal to order the oncotype test to find out whether I would actually benefit from chemo. It's ongoing but my lovely BCN has said if it is a firm refusal she will see what she can do - I suspect she means to refer it to the surgeon.

I went back to work today. That involved walking out of my front door, 10 feet across my yard to my home office but yay me anyway! I'm knackered now to be honest, by the work not the ten yard walk!

The oncologist phoned this afternoon. They're ordering a bone scan for this pesky back ache of mine. Yikes.

Lexxy, I'm currently interested in all things oncotype and would be really interested in your score if you're prepared to share it. Feel free to tell me to shove off and mind my own business, I shan't be offended! I suspect that thick skin of mine delayed my diagnosis 😚

Zena, hope you're ok. I do understand that it must be hard to read the no node thing but I'm going to be honest, I'm going to continue to celebrate the good results of anyone on here no matter what they are. When this thread first started it was a group of us with really similar stats and a couple, like Silver (hope you don't mind Silver!) whose stats were different but we were all node negative. More and more people started posting including, for the first time, people who were node positive. It was only then that I told my real life friend, Charlotherapy, about this thread because she's stage 3 as she's said and until the thread expanded I knew there was no one else here in her position so I am conscious of what you're saying. This thread now caters for everyone and node negative is something to celebrate for those to whom it applies but I completely understand if you feel you can't respond to those posts and nobody would expect you to, we're not superhuman and we're all just muddling through as best we can. I honestly do understand to a degree because (letting out my not-so-inner bitch here) I feel that way about straight DCIS. I just never respond to those posts. Helena hugs are the best so enjoy it 😘

Speaking of Helena; Helena I need to pick your brain on rads. How's it been, side-effects? What are you doing with creams etc?

[Silverlady]

Helena - I hope your rads went o.k. today - how many left now? I know they finish on my birthday, so a double celebration 😀😀😀

Strudel & Emily - what are your treatment plans - I don't seem to be able to keep up with all comments, have you both escaped chemo?

[zena75]

And janes hugs too xxx

[zena75]

Aw thanks ladies - and yes Truey def a bloody big YAY for you .. and a 👊🏻Fist pump xx
Yes hard night last night but at school pick up so got to put my brace face and pants on ..
Thanks for the huggles H they'll help me get outa the car and face the jolly playground xxxxx

[Truey]

Hi Zena,

Just so you feel better, I had DCIS, plus an invasive tumour, Grade 3 with node involvement. Things have gone well with mastectomy and ANC,  chemo (doing my last cycle as I write) with radiotherapy to follow.

Not all of us have escaped node involvement but we will still get through it.

(Am I allowed a different yay for the end of chemo 😉?)

Hugs

Sue O

[Lexxy]

Thank you all so much for the warm welcome! It's just so nice to know you're not alone isn't it, it makes all the difference.

Huge hugs to those who are waiting nervously for results or who have recieved the horrible news recently and are waiting to hear what's next. 

I'm just taking each step as it comes with no expectations of what will happen and that seems to be working for me in terms of coping day to day. I'm on my second day back at work and although I'm a bit tired it hasn't been too bad so far, though it does all seem a bit pointless now in the grand scheme of things!

FIngers crossed that there's no weather disruption for you guys who are having your Rads.

xx

[EJM60]

Bigs hugs for you Zena - we all have good days and bad days - you rant away.
Jane x

[zena75]

Hi Lexxy ,
I'm 41 and have bc and in nodes ( could people please stop going nodes clear yay - as some of us have it and may have it in nodes and hearing people yay!! , even though I totally understand;makes me more scared ) sorry to be a grump I'm due on and grumpy but it is like me someone saying yay it's only stage 2 I'm so so happy it's not stage 3 - or thats what it feels like - god am I out of order saying that? I am happy for people but it scares me how happy they are when I have got it in my node !!!😢 Rant over 🙄 I feel terrible now but won't delete it if that's ok xxxx
Anyway lexxy yes I'm going mad in my head too .. day to life is good and I'm actually ok but at night I worry so much I can't sleep - I feel every ache and pain and think that's it I'm dunfor 😵
But when I'm busy I forget a bit .. my my arm hurts my back hurts and every twinge is more C ...
The support on here is amazing - and we are all in this together.. do what you can to put your mind at rest . I've found diving into eating healthy and drinking healthy drinks had helped me feel like I'm doing something..
I'm sorry your here but we will support you as much as we can .., zena xx

[Emily T]

Snow Saturday then and melts sunday...

[Jo C]

Jane, fingers crossed that the weather is kind to you. I'm used to driving in snow but to be honest, I'm not as confident as I used to be. I tend to stay off the road as much as I can if the weather is bad. Good luck xx

[ali1961]

Jo not Jane (sorry)

[EJM60]

Feel a bit selfish Ali as I usually love the snow!  I work very locally to home so can walk if the weathers bad - just a very nervous driver - I had an accident 35 years ago and have been lacking in confidence since!

Jane x

[ali1961]

Sorry Jane. You're right of course. And there'll be others affected. Ok fingers crossed for no snow. X

[Jo C]

Snow is forecast here from the early hours of Thursday morning for 3 days! It's been so windy all night too! Looks like it'll be a few days snuggled up keeping warm with a sprinkling of cold crisp dog walks 😊

[EJM60]

I really don't want snow for the next 4 weeks while having my radiotherapy as it's an hour's drive there and back, and I'm a fair weather driver!
Jane

[ali1961]

It's forecast in London on Thursday evening. Selfishly I really, really want it to snow. Only times I've seen snow in the UK as an adult, I've been in roles that made it a problem. So bring it on. I'm up for snowman building on Friday.

In other news, I'm about to cut my own hair. It's pretty long right now and I wear it up. It should be falling out by Monday, so I don't really see what harm it can do. Worst case I'll have to break out the wigs/scarves a bit early. Always fancied cutting it myself, so might as well grasp the moment.

I'll report back

Have a good day everyone.

Ali x

[Emily T]

Are you forecast snow tomorrow?

As an aside, I read that 4 in 100 tested with oncotype have chemo.

[EJM60]

Completely un-breast cancer related - has anyone noticed how many posts on this thread since November? what a lot of support we have given to each other. Have woken to a blue sky this morning so off to walk the dog before it disappears again!
Jane

[Emily T]

Delays seem par for the course! Sigh!

Ali, I think I should know but I can't remember LOL! I think badger rustlersounds good he he

Welcome lexxy, to the mad world of the how's everyone doing thread. Poor you have 2 ops, what a pain....I unsure what % of oncotype come back high.

[Strudel]

Sorry Claire, that's pants.

Ali, I am indeed a badger rustler 😊 . Have a euromillions ticket, hopefully I'm about to retire.

[Claire123]

Awh Alex, that's great news. It must be such a relief ️xx
My appt has been postponed to Thursday as the lab results weren't back from the core biopsy - another couple of restless nights for me

[ali1961]

Does everyone else know what Strudel does for a living? MP? Soap star? Badger rustler? 

Ali x