Oh what a farce, Sal! How can they treat people like this?!!!
I do hope you hear soon and manage to get some good sleeps in. Sending love and hugs (and to everyone else) xxx
Bloody hell Sal, think Sam has summed it up with FFS! It's so unfair how they've left you hanging. It's bad enough when you've not had BC waiting for the results, I'm not surprised that the uncertainty is driving you crazy, I'd be rocking. I really hope you BCN has the decency to call you tomorrow, it would be very unfair to have to wait until Monday before contacting you. I know you probably don't feel it right now but you're one tough cookie and we all admire your strength XXX
Sounds like the Christmas prep is going in the right direction Sam 😋 well done!!
Well I didn't hear back from any of the BCN's today, so let's see what tomorrow brings! If they don't get in touch my BCN is going to get it with both barrels on Monday morning! 😒 This is just turning in to one big farce! If the scan is clear how easy would it be to call someone and say all is good!! If it isn't you call and say, scan wasn't completely clear so Doc will need to discuss it on Wednesday?! 😁 Easy!! Why they think not telling me anything is less stressful, I will never know! But I intend to fill them in when I see them, then perhaps someone else can be saved this horrible 'being in limbo' 😡
Right I am in serious need of some sleep, I have been up since 3!! Don't know why I woke but I did and I couldn't drop off again 😴
Hope everyone is well, and busy preparing for CHRISTMAS 🎄🎄🎄🎅🏻🎅🏻🎅🏻🎅🏻🎄🎄🎄 😛 Only 15 more sleeps 😱😱😱😱😱😱😱😱
Hi All, MOAN ALERT!!
Now just in case I had forgotten about my impending CT results, the hospital time their letter about my previous appointment, perfectly! This morning in the post I have a letter outlining what was said at my last appointment?? Or at least that's what it was supposed to be.
BUT he could of been talking about someone else's appointment. It mentioned areas on the ribs, which he never mentioned, the hotspots are referred to as hotspots with Lytic Lesions, so of course I then Google that. But the best bit that topped it all off, was the comment......
She has decided that she doesn't wish any further investigations at the present time?!! 😱
So of course I am totally confused, BCN is away and I am fed up with the whole thing.
I have contacted the BCN's and asked if someone could call or email me with the scan results, as I don't think it's fair that it has been discussed but I am the only one who doesn't know the results! Still waiting to hear back from them.
Its like I said to them, I don't need to find out all the details just whether or not the scan was clear, will do for now. Then at least I can relax if clear, or be prepared for my appointment on Wednesday! If that makes sense. Seriously these people might be good at getting rid of cancer, but they drive you insane in the process!! 😜
MOAN OVER......How are the Christmas preparations coming along ladies 😃🎅🏻🎄🎅🏻🎄🎅🏻🎄🎅🏻🎄🎅🏻🎄🎅🏻
Hi all. Hope you're doing ok Sal. Thank you for the card. Mine are being written this evening! Have a lovely time with your mum. Hopefully that will take your mind off things.
Jane, that was a very poor show (your Christmas shopping experience) although I am exactly the same. Over the last few years I have bought a lot of mine from Amazon, I know it's cheating but I just hate the crowds at Christmas and could never be as organised as Sam! I went for lunch to a local garden centre last week and got quite a lot there so I'm actully almost done, which is very rare for me this early.
Jolly cold today.
Love to everyone xxx
Sal, have you called to try and push for results ? This waiting is awful for you.
I've had a tidying up day today, i have cleaned my fishtank and moved furniture around the lounge ready for a tree to come in at some point this week.
In the morning I'm taking my friend Paula to her chemo at my hospital. I met her on facebook in the Breast Cancer buddies group. Tomorrow is number 5 and she is doing well - she isn't cold capping so just going to pick her up and take her and annoy her while she is poisoned then we may go for a coffee after if she feels ok.
I've just been to Alex's Christmas play, he was a Polar bear, such a good production this year and everyone looked like they really enjoyed it.Tonight I'm hoping to try and write some Xmas cards - Sal thank you for your card, i am so behind with stuff like this, i should have written them in November when i had more time. On Thursday I'm taking my mum out for breakfast to a lovely garden centre called Bents, i think i may buy a few nice pressies there but i'm not far off finishing. Need to just write a list of what i have left to do.
Anyway, Sal it may be worth calling just in case, they can onkly say no can;t they.
Sending love to you both,
Sal, I hope you have a good time with your mother this weekend and you can manage to take your mind off things for a bit even if it is a few hours at a time. I can see what you are saying about waiting for the results and it seems so unnecessary that you have to wait an extra week after the meeting.
Been Christmas shopping today and got totally confused as to what to buy everyone. I distracted myself in Waterstones and looked at all the books I would like to read! I then had a coffee in Costa and went home with virtually no presents! This will not do!
Hope everyone is ok.
Sorry to hear you have to wait so long for your results, it just adds to the stress of it all for you. Sending big hugs. How fabulous that your old charge saw you and how sweet that his face lit up! Makes it all worthwhile when you get that response!
The scan will be discussed next Wednesday, then my Oncologist will next work the following Wednesday, which is when I will see him. Their theory is IF I have an appointment for results before their MDT meeting, like last time, then things might change after the meeting, like it did this time! Apparently I should be grateful that I only needed a CT scan, because they did discuss doing a bone biopsy!!! But my oncologist said it was a bit drastic at this stage!
Tara they wouldn't contact any earlier if they found anything as even if they find something it's not going to be something that needs dealing with that quickly....if that makes sense!? At least I have a date, as waiting around for a call would be worse!
You never know if it's clear my BCN may sneak a phone call in before then 😉
nativity was very sweet, His face lit up when he saw me 😃 xx
Sal, i'm sure if there is something to show they will be in touch sooner - i was told when i had my scan that they were sending the results to my oncologist within 30 minutes of me leaving. When i went to see him he didn't even remember i'd had the scan ! If i were you i would call them within the week and chase for a quicker result.
How was your navilty today ? xxxx
Surely if there were any concerns they would let you know sooner? It is so cruel to make us wait so long for results. I hope with Christmas to prepare for you'll have something to take your mind off it (harder said than done, I know) Sending hugs xx
2 bl00dy weeks to wait, for results 😒 The MDT meeting is on a Wednesday afternoon, so I will have to wait until the following Wednesday to see my Oncologist 😒 Seriously they like to drag things out! Xx
Keeping everything crossed for you Sal. I still keep getting reminders myself of that time of waiting 2 years ago and my heart really goes out to you having to tolerate this. xxxx
Thanks Tracy I really appreciate that 😃 seeing BCN today for a chat, hoping she might let me know when I am likely to get the results! Although she's not the most reliable person 😋
Welcome back Tara, glad you had a lovely time!
i am back from scan bruised from cannula, but other than that okay! Now the wait begins! But if one more person says "it will be clear, don't worry" I will hit them! Let's face it no one knows that for certain, so I prefer to go along the lines of "I hope it's all clear, but there are no guarantees, so I will wait for the results"!! Let's face it everyone expected the bone scan to be clear!!
Right time to to watch some TV and try and forget about this for a bit! Off to old charges nativity tomorrow morning 😃 very excited xx
I'm back from the States and feeling very jet-lagged. I had such a lovely time and was sad to leave all the family.
I've just caught up on all your posts over the last 10 days and am really hoping that your scan results come through quickly and are positive Sal. Sending lots of hugs and love your way.
Also sorry to hear about your mum, Sam. I hope (for your sake as much as hers!) that it turns out to be nothing.
Sending love to you all xxxx
Thanks Jane and Sam, really appreciate the support. Feeling ridiculously nervous, but not really sure why! I suppose it's just that feeling of having no control over this. I'm just hoping this scan will show them what the hotspots on the breastbone were. So I hopefully don't have to do anymore scans, anytime soon!
Will pop back on later and let you know if I got through it without tears?! Not looking likely right now as I am feeling very emotional. But I'm sure by now they have a warning of HIGHLY EMOTIONAL written on all my files 😋
hope you you both have a nice afternoon xxxxx
Thanks Sam, thought you'd given up on my moaning all the time 😉 as I had seen your name appear on another post! 😋
sorry to hear about your mum, let's hope it's nothing serious......or she'll drive you nuts.
I am am trying to keep myself occupied today, so I haven't got too much time to worry. Need to pop out and get the last few Christmas cards. Then come back and wrap the last few presents, then in theory I am ready for Christmas!
Then I just need an 'all clear' from the Oncologist to give me the best Christmas present, ever 😃
Sending lots of love to everyone. Xxxxx
I'm still here Sal, struggling on regardless. Still a bit of trouble logging on here hence less comments. Just been shopping with my mum - wow, she mentally exhausts me. Today she has a funny patch of skin that has changed so she went to the doc who has referred her but she now thinks she either has skin or breast cancer - now she just keeps saying to me she understands how im feeling coz she might have it too. God help me of she does as i'll never here the end of it - she is bad enough without it !
Sal, i really struggle to sleep - ive just been out and bought two new pillows. I'm hoping they will help, either that or the bottle of wine i bought !!! Maybe you need to start drinking !!!
Anyway, i'm struggling to find my festive side this year big time - wish it would be Jan 1st to be honest 😞
Hang in there Sal, love to everyone else
Wow talk about feeling like I've stepped back in time......remember all those early wakings during Chemo! Well here I am wide awake 😕 annoying as I was hoping that I might get a lie in today! But clearly the thought of this scan is really getting to me. I've tried so hard to put it to the back of my mind, but it's tough.
Anyway just got to get through one more day, then step one will be done! Then it's just waiting for the results 😒 Just hoping I get the results quickly!
Right lets see see if I can get back to sleep!
Sending love to you all. Jane and Jen thanks for the supportive texts, I really appreciated them. Starting to feel like I'm the only one who still comes on here. So am talking to myself, but it's better than bottling up 😉 xx
Thanks Tracy, just having a bad day, I'm sure I'll be back in positive mode soon! It doesn't help that I don't know when I'll get the results. If the BCN calls or emails and tells me Oncologist wants to see me, do I assume the worse?! Because surely good news could be given over the phone!
Also so with my luck my BCN will probably take a weeks holiday 😁 maybe I should ask her that 😉
Thanks for the hugs, much appreciated 😘
Everything you're feeling is only natural Sal, I'd be lying if I said I'd feel different. I know I'd be so frightened, even if in my heart of hearts I thought everything would be OK. My worst nightmare is going through the feelings of uncertainty again, sitting there and waiting to hear the results. I have the upmost respect for you. I hope they get the scan results back ASAP and you're able to celebrate knowing everything is OK.
Sendung you loads of love and hugs Sal XXX
Hi all, hope you're having a good weekend.
I've just finished work for the day. Feeling a bit tearful. Had a letter today about CT scan appointment. Stupid I know, but suddenly seeing the information written down, takes me right back to the scan I had when they found my nodes were affected 😒
2 years on and I feel like my life has been turned upside down again 😥 I was thinking about things and I know that there's a really good chance that things will be clear, although I thought that before the bone scan. It's just part of me is thinking "what if" and I know that's stupid and I shouldn't think like that. But I can't help it. I don't think it helps that I don't know how long I will have to wait for results!
Just feeling a bit stressed and worried about the whole thing!
On a plus, I have something to look forward to. I'm going to watch my ex charges nativity play on Thursday 😀 he's a narrator, dressed as a cowboy?! Don't recall that being in the nativity play when I was at school. Although during my years as a nanny I have had to make numerous costumes, and none of them have ever been anything 'normal'. Think the weirdest was a condor!! I'll never forget that nativity play, it was the one where baby Jesus was played by a 3 year old, and he sat in the manger opening his gifts 😃 brilliant!
Sending love to you all, I must finish writing cards and wrapping presents. Keeping busy takes my mind off things. Xxxx
Very true! Although not sure when I will get the results?! As I don't have a booked appointment until Jan. I asked BCN if they would be able to give results over the phone, and she said lets wait and see??? So of course now I will panic if they call me in to get results, as I will assume that means they have found something! Don't you just hate the way cancer plays with your mind!! Life used to be so much easier!!
Hope the pots are going well! Xx
I don't mind having the scan Sam, IF it gives me peace of mind! But am a bit apprehensive after the bone scan, which everyone said should be fine, turned out to create more questions than answers! If it had been clear, then I would of been happy, like you! Sadly it wasn't.
Hope it sorts itself out soon 😉 sounds frustrating and painful xx
I am feeling fairly settled, although having all these appointments isn't helping. Z is lovely and her parents are great. So I hope it continues to work out. We did some Christmas cards, and salt dough Santa handprints this week, which her mum and dad will love, I am sure. I actually felt like a nanny again 😆
tomorrow I am collecting my old charges from school and taking them out for tea 😃 I am very excited, as are they 😃
I'm fine thanks Sal, the foot is still playing up and sometimes it is really bad and I hobble everywhere and other times it is fine - it's a damaged nerve thing so sometimes it gets aggravated and I know all about it.
I can understand you being thrown off kilter by what's going on, but I'm sure they are being cautious. How is the job going, are you more settled into your routine with it and everything?
Thanks Jane, I know they are just covering all bases, and if they had mentioned it when I went to see them I wouldn't be so bothered. But to make out they weren't concerned, then to discuss and decide on a scan, makes me feel far more anxious! I've just had enough 😕
So thanks for the hug, it's much appreciated. 😘
How are you doing? How's your foot? Xxx
Oh Sal, what can I say. At least they are being thorough and as you rightly say hopefully they will be able to give you the all clear and you can relax. It just seems to be one thing after another for you at the moment so sending a virtual hug your way.
Hello to everyone else, hope you are all ok and not working to hard etc. Sam, how many pots have you done this week?
Well I didn't quite get my 3 months break away from scans and worries. After discussing things at their MDT meeting, they have decided they would like to do a full body CT scan, to check there's nothing else they are missing 😐
I am beyond fed up 😕 just as I was starting to feel a little more positive about things they throw a spanner in the works!
Anyway at least they are keeping a good eye, and hopefully this will give me the total all clear, so I can relax a bit! Just waiting for a date to come through xx
Hi all, hope everyone had a great weekend.
Sam do you not get copies of the letters that your Oncologist sends to yr GP? I have a copy sent after each appointment, with any of the hospital doctors. On top of the letter each time, is where the cancer was, size, grade, ER+8/8, PR+8/8 and HER2 negative! I would definitely ask someone, as it is useful to know how hormone based your BC was.
Well 5 days without Tamoxifen, and this morning I got out of bed with un-stiff ankles for the first time in 18months 😃 Amazing!! Also losing weight, which I think is down to losing fluid that I was retaining while on Tamoxifen.
Oncologist did say it would take about a month for the Tamoxifen to be completely out of my system, but I am happier just with these few improvements.
Hope everyone has a good week xxxx
Your BCN might be able to check for results and give you the info over the phoneSam. Think it's worth checking just so you're aware. My BC was invasive lobular grade 2 ER+ 8/8 but HER- XXX