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.
Oh I love your humour, really made me smile. Mine was right side as well.
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.
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.
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
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
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?
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!!!!
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.
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
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
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
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
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.
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
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.
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
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.
Jo - thinking of you today, hope all runs smoothly.
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
Hmmmm, Imy slightly concerned that I might! Godo forbid I ever have to have another anaesthetic lol
Sending you a gentle hug and hoping you are ok xxxxx
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
oooohhhh no you can never watch too much bowls 🙂 🙂 xx
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. 😂😂