Our Gang! Come chat!

[Silverlady]

Yes, I met him for the first time on th 17 January, he seemed very nice, but very quickly skipped over the Medullary features and that I am only weakly ER+.  He told me that I needed a heart scan, which I had last Wednesday and that the Chemo nurse would contact me and let me know a start date for the FEC.  He would then discuss what rads I am having on my fifth chemo - I don't know why he couldn't discuss them now.  They sort of leave you reading into their words, probably a lot more than you need to.

[Emily T]

Susan, yes you were 2 days before me. Have you seen the oncologist yet?

[ladybowler]

Strudel

Oh I love your humour, really made me smile.  Mine was right side as well.

H xxx

[Silverlady]

Hi Jo,

What chemo did you have? was it FEC? Glad you are feeling o.k., don't overdo it.

Strudel - My BC was on my right as well, although my Mum's was on her left.

When I found my two lumps on Thursday evening last week, that's how I calmed myself down - that if it had come back, then it had been in my body a lot less time than the original BC lump and that hadn't spread. (I still have this stupid fear that the BCN's only said that it wasn't cancer to pacify me until I next see the Oncologist - how irrational is that?)

Hahaha - Ali, never been an exhibitionist before, but now I'm showing it to everybody.

Lexxy - if you count from my mx, its been 7 weeks tomorrow. I just want to get it started. But, at least I know what I'm waiting for unlike you and Emily.

Hugs to everyone.

[ladybowler]

Lexxy

If I was you I would call and ask them why? the appointment is so far away and that you are really worried about the length of time in how it is affecting your treament.  If you get no joy you can do the same as I suggested to Emily, call the PALS team at your hospital and explain to them to see what they can do for you.  They have an obligation to investigate on your behalf.

Helena xxxx

[ladybowler]

Emily

You can contact the PALS team at the hospital and speak with them to see if there is anything they can do, explain to them about your concerns about how long it appears to be taking to get seen and mention to them about the nice guidelines information you posted later on here and see if they can help you.

You should be able to get their number from the main hospital number or it will be on the hospital website.

Helena xxxx

[Emily T]

This is an interesting document https://www.nice.org.uk/guidance/cg80/chapter/1-guidance#postoperative-assessment-and-adjuvant-thera...

Also everywhere I read Oncotype should take no more than 3 weeks! By the time I get to the oncology appointment it will be 10 weeks since my op! 10 weeks unprotected! I feel sick thinking about it

Glad it went well Jo and glad you have had a lovely time Ali xx

[Jo C]

Ali it was fine today. I think I must have cross posted. So glad you're having a lovely time with Dylan. Are you under the Christie now? I'm not sure when you are moving. Enjoy the rest of your stay xx

[Jo C]

Thank you all for your good wishes. I'm back home now and all went well with the first chemo session.

Strudel, welcome back. Sometimes you just need that time away but we are all here for you. I was very anxious about having a bone scan, well getting the results of the bone scan. I tried to read the radiographers' faces but they were completely deadpan. It didn't help that they had to do extra views and my mind just went into overdrive. Big hugs to you hunni and hope you get those tough pants back on soon xx

Helena, hope your first day back at work went well.

Emily, big hugs. I'm not surprised you're pissed off. I have hate the waiting as I just want to get on with things. Fingers crossed the oncs get a move on for you.

I'm not completely up to date on here at the moment and it's set to get worse if the chemo brain thing is true! Hugs to you all. You are a fantastic bunch and have really picked me up when I've been struggling.

Jo xx

[Strudel]

Emily my heart goes out to you. This is like some sadistic torture game for oncologists or something. The variation between hospitals is also something I really struggle with. I can only guess that in your case the oncologist wants to be sure s/he has the oncotype results in first so that you can have a complete and fruitful discussion. The oncotype results are obviously out of the hands of all our oncs. I had my one and only appointment 3 weeks after my op but I left feeling uninformed and angry. The onc I saw was a registrar and made me feel like a boring middle aged woman with boring cancer. I was quite surprised he didn't fall asleep from the way he treated me. The consultant came in at the end to clarify a few things, he was clearer than the registrar but was such a wet lettuce that I made up my mind if I needed chemo (if I could get him to do oncotype) then I'd have to change oncs.

I also had a big meltdown about tamoxifen. If you can get your oncotype result Em and it's low, then push your BCN to get your surgeon to prescribe it for you. They can do this, they just usually leave it to the onc just in case of chemo. My surgeon said if I was going to ask for oncotype, which he recommended I did, he wouldn't prescribe me tamoxifen otherwise he would have. It was one of the reasons I was so angry when first refused oncotype as i felt I'd had an unprotected 3 weeks for no reason. The way I made myself feel better about it was to remind myself that I had a heck of a lot less cancer (if any) than I have for the last year or so. The difference is I know about it now and that messes with my head. Massive hugs. I know exactly how you feel and it's **bleep**.

Susan, 😂. If you added both my boobs together and shoved in a padded bra I still wouldn't be close! It's awesome though, looks like a really nice texture! 😂😂😂
On a completely separate note, a quick straw poll, which side was your BC? I noticed throughout the forum that there were many more lefties than righties so googled. Apparently left is more common - they're not 100% sure why but believe it's something to do with how everyone's left one is a bit bigger anyway as it has more tissue. No idea why. I of course got a right sided one which explains why I now look so lopsided if there's less on that side to start with.

[ali1961]

I just wanted to duck in and say hello. I'm still in Manchester with the family, Dylan is gorgeous, and I've promised to buy him a drink on his 18th birthday, so I'm definitely going to have to be around for a good long time. He's been on my lap for ages, we've sung lots of songs and I've changed two nappies. Such a long time since I did that.

Strudel, sorry it's so **bleep**. I suspect this is a series of peaks and troughs-and the challenge is climbing out of the latter and not falling off the former. I'm thinking of you. 

As for the delayed appintments, and poor communication this sounds outrageous. It's really hard to give advice, but I've found the consultants' secretaries are pretty effective. You might be able to communicate with them, especially if you've had surgery already. I've also found email to be a better way of chasing, than the phone. Or maybe phone with a follow up email? Sorry, that sounds very blasé, just do this or that, but I've decided that being arsey is an important characteristic of getting through this. It's easy if arsiness comes naturally, but even if it doesn't now may be the time to kick up a fuss.

Oh and Susan, yes my husband has seen your boob! 

Love to all, Jo hope it's been ok

Ali xx

[Emily T]

Totally Lexxy thats a ridiculous time frame, you must have something before that. Shall we turn up together and demand answers lol!

I have asked for my Oncotype results when they come in. Katie had been pretty good at sharing info so hopefully I won't have to wait for that

[Lexxy]

Oh god Emily I'm exactly the bloody same and i'm going nuts! No idea what the March appointment is even for and definitely expected to get an appointment through to discuss oncotype results before then!! Also was taken off tamoxifen awaiting treatment decision so yep, nothing stopping it growing at the moment. We've given Katie a bit of work to do today haven't we!

Strudel so nice to hear from you and sorry it's such a **bleep**ty time for you. Everything crossed that your bone scan results come through quickly x

I've had the all clear margin wise from the second surgery but nothing beyond that, so I thought my next appointment would be to get oncotype results and agree what treatment would need to be. I can't believe they would leave that all until March though.

Thank you for the much needed hug Susan. How long have you been waiting for the chemo dates? Big hugs back. I would be using that fabulous new boob as a stress boob today if I had one x

[Silverlady]

I can see why you are worried, at least I know I am going to have chemo, so if anything does start coming back, it will get zapped.

Did your BCN say she could get the report for you?

[Emily T]

Just everything, I haven't seen an oncologist yet. I had results from the op from the clinic and was referred to oncology for an appointment. I have no idea really what its for, just that they arrange the next steps.....I have asked my BCN if I can have my oncotype score as that was 4 weeks ago so should be back. At least then I will have an idea if its just radiotherapy. I'm not even on Tamoxifen yet as they said I had to wait for oncology so there is nothing stopping the cancer at all!

[Silverlady]

Oh Emily - I hope you don't mind me being a bit thick, is the result of your oncology report whether you will have to have chemo?

[Emily T]

Elizabeth I have made some new friends on here that I wouldn't have otherwise, its the only positive in all this crap!

Good to hear from you Stru xx

I'm really pissed off, I emailed my BCN again about my oncology appointment and although I haven't had the letter yet, there is one on the system for the 22nd of Feb!!!! OMG thats another 3 weeks away, that will be over 7 weeks since my results and 10 weeks since my op! Why oh why does it take so long. I'm so frustrated that I could cry, ive got more and more anxious again, I don;t know what to do with myself. 

Edited to add. Lexxy, you and me seem to be in a similar place and the same damn hospital!!!!

[Silverlady]

Hi again, I have just finished the wages, so I can sneak on here for a bit

Strudel - It's so good to hear from you.  You have to go back a few pages, as I put my boob up for you to make you smile.  Sending you huge big bear hugs my darling. When do you get your results for your bone scan?

Emily - No matter how many times you relate your elephant willy story - it's so funny. When is your onco appointment?

Elizabeth - lovely to hear from you again, did you manage to have a good holiday, despite the BC diagnosis.  I can understand you not wanting to leave - it's safe where you are and you don't have to deal with what's coming.  I wanted to stay in the week just before my mx, nothing had happened, I knew it hadn't spread and I just wanted that week to never end. Good luck on Wednesday. Keep coming on here and we will be here for you.

Lexxy - what a bummer, March is over 4 weeks away, surely they must have got that wrong.  I hope your BCN comes back with an earlier appointment. Surely, they must realise how horrible it is waiting. Sending you a big hug.

Sarah - my one boob friend, soon to be my 2 boob friend. YAY - new boob for Sarah - pictures please I'm 2 boob Susan today

Helena - Battle of the boobs - Sarah has got no chance

Ali - how was your weekend?

Jane - How are you doing with you rads, how many have you had now?

Emma - I hope you're o.k. - are you a bit more comfortable today?

And I'm still waiting for my chemo appointment - maybe they have looked at my results and decided that I don't need anymore treatment, but they know I will be sad, so they daren't contact me! - I wish.

Susan

[Elizabeth1]

A whole new world is opening up for me. It's 1 I'd have preferred not to have entered but so far I am finding it all rather interesting & as a result have met & spoken to some lovely people like yourselves

[ladybowler]

Strudel

Hey and really good to hear from you, that is totally understandable about not wanting to think about this bloody awful disease and we get you on that one xxxx

Tough pants are on the back of the chair girl xxx

[ladybowler]

Hi everyone

Hope you are all as well as you can be today.

Well, I think there is going to be a battle of the boobs between Sarah and Susan coming up 🙂

First day back at work for me today, only 4 hours but it was good to be back and getting the grey cells working again, probably be asleep soon 🙂 xxx

[Strudel]

Hello everyone,

Apologies for flitting off but I just had to have some cancer free days, definitely not to talk about it and to try as hard as I could not to let myself think about it either. I'm having a blip, it's the waiting that does it. I'm not bothered about my oncotype result now (famous last words?) just need to know the bone scan outcome. Every minute feels like a day, I know you all know how that feels. 

I haven't been reading and haven't read back more than a few posts so I'm really sorry if I've missed anything. I remember it's Jo's big day though - good luck!

Lexxy, what's the March appointment for, surely not your post op results?

Well big hugs to everyone. I need to go and find my tough pants X

[Lexxy]

oooooh Sarah that's so fantastic! New boob for the weekend!!

I've been waiting for Oncotype which was sent off around 22nd December. I was told 3/4 weeks, maybe 5 because of Christmas for results, but had nothing through. Calling today, there's an oncology appointment booked for March but none of us know what that's for  I just hate not knowing what my next step is, that's what always makes things a bit easier for me.

Bless you Elizabeth, you're at a really tough stage just waiting for information. I know I felt a lot better once I knew they were on it and they had a plan and I knew at least the next couple of steps I needed to go through. The biopsies can be a bit tender for a while, I was quite bruised from some of them. The bra sounds like a great idea, I've had to buy a few as I'm so not used to non wired and I'm still trying to find ones I like and that fit properly! I got a couple more yesterday to try out this week.

[Elizabeth1]

Hi Lexxy. I have only had the 1 appointment whereby I was told I had BC & 3 days later I was going on holiday. Everything will start moving no doubt when I return home. Breast I had the biopsies on has been feeling rather tender with the occasional sharp pain. Went into a local M&S & bought a post surgery non wired bra. It is so soft and comfortable & will be buying another 1 when I come home. It said £20 on the rail but only cost me £16 something as I was told there is no vat on such items

[Sallyann43]

Hi everybody ... Lexxy what appointment will that be for in march?? I bloody hate this waiting about .. drives me nuts! I know they have to get all results and meet to discuss etc and I know they are also planning for hundreds of ladies and not just me but we all feel the same way don't we??

However, just as I'm writing this the prosthetic lady has just phoned me and I'm going this Friday at 11.30am for a boob 😁😁😁 .. can't wait!!

Emily - any news on oncotype result yet?? Don't they take a long time? It's what I'm waiting for too 😱
Strudel - where are you? I hope you're ok 💜

Silver Susan - have you read that??? New boob!!! 😂😂

[Lexxy]

Hi Elizabeth, totally understand the mixture of nerves but also wanting to get on, it's really tough. Have you had any surgery or anything yet?

I'm gutted, just found out my next appointment has been booked for March 😞 The BCN's are going to find out why for me but I can't bear to wait that long for some news. 

[Elizabeth1]

Good morning everyone. This is my last full day away & I fly home tomorrow. Have been feeling sick the last couple of days but think this is down to nerves. Really don't want to leave but also want to get my hospital appointment over with this time Wednesday morning to find out the full picture on my diagnosis & what treatment I'm going to receive. I'm feeling very scared but at the same time trying to think that at least treatment will soon start to take away this

[Silverlady]

Good morning ladies,

Good luck today Jo with your chemo.

Emily - when is your onco appointment?

Just wanted to wish everyone a good day today.

Susan

[Lexxy]

Good luck today Jo x

[EJM60]

Jo - thinking of you today, hope all runs smoothly.

jane x

[Emily T]

Good luck Jo xx

Years ago I smashed my elbow and when I went a year later to have the pins out, they gave me something to relax me! I had been to the safari park the day before and seen the elephants getting randy!! I decided to share this titbit of information in great detail lol!

Lexxy I asked his age before I went in!! They gave me a pain killer that made me woozy! lol! He was theatre staff, don't think he was your guy.

Sarah, yourealy couldn't sleep could you, thats and ungodly hour to be on here

Stru, you know we are here for you hun, if you are reading. xxxxxxxxxxxxx

[Jo C]

Thanks Sarah. Hopefully I will be back on here later to update you about chemo day. I was awake in the early hours too...think it must be excitement 🤣

[Sallyann43]

Good luck jo c for starting chemo today ... let us know how you get on xx
We haven't heard from Pam for a while, hope she is ok x

I'm awake because I think I are too much birthday cake at the party 🤢😂

Emma - hope you're feeling ok xx

Strudel - big hug, how are you? Xx

[Lexxy]

Emily that's brilliant 😂 I don't think he was about when I came round luckily, god only knows what I would have said!

[Jo C]

Emily, that is funny 😂. Where in earth did the elephants willies comment come from?!

[Emily T]

Hmmmm,  Imy slightly concerned that I might! Godo forbid I ever have to have another anaesthetic lol

[Sallyann43]

Hahahahahahaha Emily - hope you weren't talking about elephants willies with him ... you make me laugh 😂 Xx

[Emily T]

OMG! I've just freaked myself out! Why do I even know that! Howe can I asked he age of operating theatre staff?! I'm ashamed lol

[Emily T]

Yes, Mr Clarke with an unprounceable 1sr name. Lol.

I got a bit worried about anything pointy 😂

OMG I wonder if the assistant was the same, mine was lovely and he was 29 plus 1 😀

[Lexxy]

No idea on the wire! I had this stupid complication of the asshole being stuck between 2 non cancerous lumps, initially thought to be one lump, which made the wire a bit trickier I think. I also had 2 non cancerous ones on the other side and then the MRI showed up another one which was again OK. My boobs were like pin cushions lol! I've not only made it through all the BCNs, I saw all 3 consultants as well, never the same combination twice lol.

Harries was the surgeon (was it Mr Clarke you had?) and he had the most gorgeous looking guy assisting him, even my other half acknowledged how good looking he was 😂 I was so glad he got to see me in my paper pants! First surgery was the 7th December then I had to go back in for a scrape on the 22nd.

[Emily T]

Lexxy how come you managed to get your wire done at Warwick? I had to go to Coventry on the morning of my op!! Mine was 15th December. I also had 3 rounds of biopsys as they thought it was in both breasts! We are very similar! lol! I've not really spoken to the other BCN's. Who was your surgeon? Was it Harries? Mine was an Asian man whos name has just gone from my mind! OMG I'm losing it!

[ladybowler]

Strudel

Sending you a gentle hug and hoping you are ok xxxxx

[ladybowler]

Emily

Oh I am sat ready and watching 🙂

Just to say my breast was achy/sore for 6/7 weeks after surgery and I still get aches and some stabbing pains now.  It takes some time for all the nerves to settle down and everything is still healing underneath which we can not see but we sure know about xx

Helena xxx

[Lexxy]

We're at a really similar stage then Emily! My second surgery was 22nd December so just over 5 weeks ago. I've had more twinges recently than I did the first few weeks so I would say that's normal. I put it down to just doing more now, although I have some discomfort in my ribs which is terrifying me!

My BCN is Paula who's lovely though Katie has been in a couple of my appointments and Helen too so I do get about a bit! I had one of my biopsies (I had 3 rounds in the end) and my MRI at Cov but Dr Williams at Warwick did the other 2 and my wire. The silver fox as I call him, along with Mr Harries 😁

[Emily T]

No not riding today, my boob won't take 2 days in a row, I'm till quite sore, I'm 6 week post surgery, is this normal?....oh, and its raining lol!

Lexxy, yes, Warwick and went to Coventry for biopsys, guide wire and stuff, radiotherapy will be there. I live in Stratford. Whos your BCN, mines Katie. I'm waiting for an oncology appointment, its also driving me a bit loopy!!

Helena, hope you are enjoying your bowls.

Susan, and exercise is great for the mind and body, I crave it sometimes, I need to burn off some adrenalin.

Ali, enjoy.

Jo, nice to see you, keeping up is hard on here if you forget to come on!!!

Stru hun, thinking of you xxx

Emma, glad you have your own room, I ended up with some woman who put her light on and read all night then fell asleep at 7am grrrrrrrrrrr

[Jo C]

Morning ladies,

It's lovely catching up with all the posts but it's taking me ages! I start chemo tomorrow so once the chemo brain kicks in I'll probably be even worse at keeping up!!

Susan, I want a boob like that. I'm only a B cup though so mine won't be anywhere near as impressive!

Emma, so good to hear from you. Sounds like you're doing fantastic. You'll soon be home but at least for now you have a room to yourself. I was on a ward with one very vocal lady who broadcast her own breat cancer experiences. My OH, who is very calm usually, eventually told her to change the subject.

Strudel, bigs hugs coming your way. I hope the anxiety is settling and that you get your results too. Do come back on and chat if you feel like it xxx

My youngest two are busy making pom poms. I've taken to knitting whilst I've been off work so have knitted them both a hat. It seemed less trouble than finishing the jumper I've been knitting for nearly 3 years 😂

Hope you all have a lovely Sunday.

Jo xx

[Lexxy]

Oh I would love that Emily. I'm over towards Warwick in a little village, about 25 minutes from Ilmington. Is Warwick your hospital?

Emma I hope you are doing well today and you got a good sleep in your own room. It makes such a difference doesn't it!

Susan, let me know what you find mattress wise, we're also on the hunt for a new one. I think it's been about ten years since we got our current one!! 😱 Still no news in my next appointment, think that's what's sending me a bit loopy at the moment. I'm going to give my BCN a call tomorrow and chase up.

Enjoy the bowls Helena, hopefully not long before you'll be back playing 😊

Ali, have a wonderful time meeting gorgeous little Dylan.

Enjoy the birthday party and spending time with family Jane, sounds fab. We're doing our usual Sunday chores today, but I'm feeling less like hiding away today so might just drag my fella out for a walk if the rain stops, oh and perhaps a bit of retail therapy 😊

Strudel I hope you are doing ok, sending hugs x

[ladybowler]

Susan

oooohhhh no you can never watch too much bowls 🙂 🙂 xx

[Silverlady]

You've been watching too much bowls Helena 😂

[Silverlady]

Sarah - you beat me by 2 mins 😂😂

I did put my boob up on facebook and there were some very funny comments as you can imagine. Have a good day at your party. It's in its box asleep at the moment. 😂😂