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Support group for secondary BC hampshire/Winchester?

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Community Champion

Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

Congratulations Julia, welcome to Grandma's World! Enjoy you cuddles with Lottie.

It seems that no-one is able to make next Wednesday so I am going to say it is cancelled, obviously it's a busy time of the year for everyone, hopefully we can come up with a date in early January either in Portsmouth or Winchester and welcome some of the new ladies who've said they'd like to join in.

Nicky x

Member

Re: Support group for secondary BC hampshire/Winchester?

Hi NIcky,

I hope you don’t mind me piggybacking onto this post but I would be interested in joining you ladies on a Winchester meet-up sometime. I am having my second appointment with the oncologist next Monday, the 9th to find out the results of my CT scan and get the specifics. I’ve only recently been told that I have Secondaries so no treatment started yet. 

Best wishes xxx

Member

Re: Support group for secondary BC hampshire/Winchester?

Hi all

my exciting news is I am a Grandma 🎉 Little baby girl born on 27th November, she’s absolutely gorgeous and we are so thrilled. Her name is Lottie Rose. 

I won’t be able to make the 11th Dec meet up unfortunately but hopefully will be at the next one.

 

Have a wonderful wedding tomorrow (well “today” in half an hour😃) Carine and Phi I Hope the sun is shining for you both. Have a fabulous day.

 

look forward to meeting you Elizabeth in the New Year, good luck with the move.

 

love to all

Julia 

 

 

 

 

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Community Champion

Re: Support group for secondary BC hampshire/Winchester?

Oh yes, congratulations for today Carine and Phil, looks like a lovely sunny day so I hope you have a lovely time celebrating.

Nicky x

ps I will update later this week to confirm if next week's meet up is on. I am away at the weekend so can't leave it as late as next Tuesday to confirm as I won't have internet access and don't want to leave it too late as we will all have to make travel arrangements. So sorry to hear about your father-in-law Helen x

Member

Re: Support group for secondary BC hampshire/Winchester?

I'm looking forward to meeting you all & will certainly keep an eye out for your meet up in January

Member

Re: Support group for secondary BC hampshire/Winchester?

Hi everyone 

Apologies but I won't be able to meet up on Wed 11th Dec. My father in law is very poorly in hospital & we are visiting every day. 

Hope you & Phil have an amazing wedding day tomorrow Carine! Sending congratulations to you both.

Any baby news yet Julia?

Love to you all

Helen x

Community Champion

Re: Support group for secondary BC hampshire/Winchester?

Hi Elizabeth, you are of course welcome to join us.

At the moment we only have the suggested date of 11th December and as we only organise this ourselves (it's not run by anyone such as BreastCancer Now) it's all a bit random!  However we try to get together as many of us as possible so one of us will suggest the next date.  As most of the ladies are in the Portsmouth area we have met there for the last few years, I'm the only one who attends but lives away from Portsmouth. Keep an eye out on here for the next date in the New Year.  Good luck with the move, quite a big one looking at where you currently live to where you're going to.

Hi everyone else - is anyone available to meet in Winchester on 11th December? I haven't had any replies so not sure if we are meeting up or not.  Knowing that Judy can't log on at the moment I will update on here if it''s taking place or not depending if anyone can make it.  I won't be in Winchester that day other than to meet up so I will probably cancel it if no-one else can make it.

Nicky x

Member

Re: Support group for secondary BC hampshire/Winchester?

Hello. I am moving from Belfast to Portsmouth on 28 December & would like to join you all for a meet up🙂

Community Champion

Re: Support group for secondary BC hampshire/Winchester?

Hi all

Sorry your increased pain is causing you so many problems Carine and they have yet to see what’s causing it. Fingers crossed the mri helps with some form of diagnosis and they can sort he pain issue out.

Regarding dates the only Wednesday I can do is 11th Dec. Other dates are difficult due to treatments (every 2 weeks and then one week off) as I never know if I’ll be too tired on the day following it.

Happy to meet in Winchester if everyone else is. Probably as a central, and easy to find venue, the Refectory cafe right by the Cathedral is where we’ve met previously when the group first started. It is a bit of a hike from the station though, but does take you through the main shopping street if you’re after some Christmas shopping! I don’t know Winchester we’ll enough to suggest anywhere else that is big enough for us to secure a table without booking. If anyone else does then please say.

Is lunchtime OK for everyone? Or do we want to make it slightly later bearing in mind everyone’s journeys and the fact it will be dark early? I’m happy either way as it’s much closer for me this time! 
As before anyone else with secondary BC who would like to join us please do and let us know on here so we can look out for you.

Nicky x

ps good luck and a happy day on 3rd Carine as we won’t see you before your big day and even though we joked that we would be bridesmaids for you I for one can’t be as I’ve 2 appointments that day, oh joy!

Member

Re: Support group for secondary BC hampshire/Winchester?

So my scan results say "essentially unchanged", 🙂, blood results weren't back yet and because of the increased pain, onc has requested an mri for my arm and will look at possibly changing treatment soon but wants to wait for blood results first. 

I'm happy with a Winchester meet and should be able to do any Wednesday from now till Christmas (depending on when mri is), 4th December probably NOT a good day, as that will be morning after my wedding...!

Community Champion

Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

It was lovely to meet up last Wednesday, even though it took an age to get out of the busy car park as everyone else seemed to leave at the same time!

Good news from my CT, all is stable, so my worries about the treatment maybe not working are tucked away at the back of my mind now (until the next scan!)

Good luck to all getting results this week, or later in the month, fingers crossed for us all.

Hopefully we can meet up this side of Christmas, Winchester was mentioned, but I don't think I'll get down to Portsmouth as the travel is really rubbish in the winter months.  Maybe some dates can be suggested or I'll come up with some once I've checked my next few months treatment schedule.

If any new ladies, with secondaries and within travelling distance of our next venue, want to join us please let us know, it's open to all.

Nicky x

 

Member

Re: Support group for secondary BC hampshire/Winchester?

Me too, see you all tomorrow. 😊✨

 

Member

Re: Support group for secondary BC hampshire/Winchester?

Looking forward to seeing you all tomorrow .

Helen x

Member

Re: Support group for secondary BC hampshire/Winchester?

Hello all

That’s all good for me. 

Looking forward to seeing you all and anyone else who might like to join us.

love Julia x 

Community Champion

Re: Support group for secondary BC hampshire/Winchester?

Hi Helen, 1.15 is fine with me I’ll either be getting a train or driving depending on the weather. Either way I can usually find time to explore the shops if I get there earlier, it’s the leaving I have problems with as the traffic builds up along my route home as I hit rush hour. Hope to see everyone on 30th, will update if I can’t make it.

Nicky x

Member

Re: Support group for secondary BC hampshire/Winchester?

Excellent, shall we say Wed 30th Oct 1.15pm at the Spinnaker Cafe then? Is 1.15pm ok for you Nicky? Quarter past or half past the hour is better for me as the catamaran docks at five past the hour!

Anyone else out there who would like to join us, we usually meet at the Spinnaker Cafe in Gunwharf Quays in Portsmouth for a catch up and tea & cake, very informal. Please come along - we're very friendly Smiley Happy

Helen x

Community Champion

Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

The new layout of the forum (about the 4th since I started on here in 2008!) is so bad for letting you see latest posts easily, so I’ve missed some of these messages until last night, when the forum was incredibly slow or inaccessible so I wasn’t able to post. Excuses over!

30th October is fine for me, fingers crossed and all that as all the more recent times I’ve been meaning to meet up something has come my way to prevent me. What time are we meeting? I’d prefer it to be near lunchtime as that will give me more time and not have to leave early to avoid the traffic if I’m going to drive.

Great news Carrine, and I can hear your squealing from here Julia!

Looking forward to seeing you all, and anyone new who wants to join us.

Nicky x

Member

Re: Support group for secondary BC hampshire/Winchester?

Sorry Helen I’ve just seen your message below as my page hadn’t updated when I wrote my last post tonight. Shall we say the 30th October then....usual place or if you have any other preferred place.  Hope you see this too Judy and Helen. 

love Julia x  

Member

Re: Support group for secondary BC hampshire/Winchester?

Hi Carine 

lovely to hear from you 😊 and congratulations such wonderful news ✨😀. How exciting, look forward to hearing the wedding plans. 
I’m happy to do 30th October, hopefully the other ladies will be along to confirm too.

see you soon.

Julia X 

Member

Re: Support group for secondary BC hampshire/Winchester?

Hi everyone 

Lovely to hear from you all. I can do all those dates Julia, happy to go for 30th Oct if Carine can only make it then.

Fab news about your upcoming nuptials Carine! Good luck with the scan results.

Exciting times ahead for you Julia with grandchild. Heart

Nicky and Judy - hope you're both ok. I know you have teeth problems at the moment Nicky so hope that you're not in pain.

Helen x

Member

Re: Support group for secondary BC hampshire/Winchester?

Hello everyone. Been a bit lonely, but find it harder to check on this forum on my phone, and can only access computer at work.

I've just had another bone scan, CT next week then waiting for results - yeah my favourite time!

I can do 30th October then 20th or 27th November.

I also have exciting news... Phil & I are getting married on 3rd December.

Member

Re: Support group for secondary BC hampshire/Winchester?

Hello everyone

hope you are all doing well and had a good summer.  Its been a while since we last met up, would be lovely to catch up soon. If I put some dates I can do hopefully we can arrange something; in October I can do 17th, 21st, 23rd, 30th, in November I’m open to date suggestions (except end of November as that’s when grandbaby is due....so excited I squeal when I say it 😂) 

take care and keep well 

love Julia X 

Member

Re: Support group for secondary BC hampshire/Winchester?

Hi everyone

This is the link to the SBC survey I was talking about at our last meetup. Please can you complete it & tell as many people with SBC that you know to do so.

http://www.myonlinesurvey.co.uk/BC19DMGS/

Thanks, Helen x

Community Champion

Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

Sorry I couldnt make it yesterday, as I've said to Helen if it was closer I might have popped in but the long drive and even longer train trip would have done me in.

I'm on the mend but only really from yesterday and still some questions about what to do with my tooth with regards to bisphosphonates as well as being on chemo which will affect my immune system.  However antibiotics are doing their job now, after it took a while for them to kick in, so I may have bought myself a bit of time before having to make any real decisions about it.

Hopefully if we can sort a date out for the next month/6 weeks and I can make it but every time it seems something comes up, typical grrrrrrr.

Take care all

Nicky xx

Member

Re: Support group for secondary BC hampshire/Winchester?

Lovely to see Julia & Carine yesterday. We missed Nicky & Judy - hope you recover soon both of you.

This is the link to the website I was talking about https://www.abcdiagnosis.co.uk/ - have a look. Also look out for the BCC Secondary Patients survey which I am involved with & mentioned to you, it should be coming out in July I think.

See you soon, Helen x

Member

Re: Support group for secondary BC hampshire/Winchester?

Will try to be there ladies but very sleepy at moment. Recovering from never ending poorly chest infection. It’s getting me down xxx

Member

Re: Support group for secondary BC hampshire/Winchester?

Sorry to hear about your toothache Nicky, hope it's sorted out soon, will miss you this afternoon. 

I will be there for 2pm.

Helen x

Member

Re: Support group for secondary BC hampshire/Winchester?

Sorry to hear about your toothache Nicky, horrible isn't it. Hope it heals up soon. I'm off to dentist in half an hour but not expecting problems this time, I'll assume we're still up for meeting at 2ish at Gunwharf unless I hear otherwise. Waterproof gear at the ready

Community Champion

Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

Just letting you know I don't think I will be able to make it tomorrow. I have a very painful toothache which is being seen to with antibiotics but it's not getting better as quickly as I had hoped.  I have another emergency appointment tomorrow morning but am not sure if I will feel any better, or sleep very well tonight.  Sorry.  I was all set to come down to Portsmouth but feeling as I do it's too far to either drive or get the train.  I hope as many of you get together as possible.

Nicky x

Member

Re: Support group for secondary BC hampshire/Winchester?

Lovely to see everyone on here again. June 12 is great for me. Congratulations Jools on your forthcoming grandchild that’s wonderful news. See you all at the Spinnaker Tower. Xx

Member

Re: Support group for secondary BC hampshire/Winchester?

Wed 12th June is perfect. So excited for you Julia! My youngest grandson & daughter have just arrived for 2 weeks from Indonesia,  a surprise visit. We have a busy fortnight ahead, including me going to the Penny Brohn centre for a course.

Good luck with eribulin again Nicky. I start capecitabine 5th June as EC failed completely ☹

 

Be lovely to see you all 12th June & anyone else in the area who wants to join our informal group 😊

Helen x

Community Champion

Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

Just to say I can make June 12th.

Ive been a bit absent recently partly due to a quick break in Southern Spain and also I am going back onto chemo as my latest CT showed some progression in the liver so I have been hanging around waiting for a start date before I commit to anything else.  Although this is a pain in the butt it is to be expected as I was aware that Fulvestrant wouldn’t hold back the tide so to speak for much longer. However I did have a good 18 months of no chemo so that was a welcome break in itself. I’m going back onto Eribulin as I think (hope) it still has some legs left in it to run as I only had 8 cycles previously and it was still working well when I stopped it, we will, as ever, see!

So I am free on 12th but if things change I will update on here.

Im assuming same time and place (1.30, Spinnaker Tower, Portsmouth?).

Looking forward to catching up with you all (and any other secondary ladies who’d like to join us)

Congrats Jules, I bet you are already knitting and sewing 😊, Everyone else I hope you are coping and doing well with all that SBC throws at you.

Nicky x

Member

Re: Support group for secondary BC hampshire/Winchester?

Hello, I can do June 12th and July 3rd or 10th.

Having another zap of radiotherapy on sternum as pain has flared up again, other than that all fine.

Member

Re: Support group for secondary BC hampshire/Winchester?

hello everyone.  Thought maybe we could meet up next month, or July. Thought I’d put some dates on here, so ones I can do in June are 11th, 12th, 17th, and July I’ll fit in with anyone else dates. Hope you are all doing well and your chest infection has cleared Judy.

Some fabby news for me...I’m going to be a grandmumma in December, first one sooo excited.

 

love to all xxx 

Member

Re: Support group for secondary BC hampshire/Winchester?

So sorry I’ve been off the thread. Been battling a rotten chest infection for four weeks had to stop treatment. So happy you had great results Jools and sorry you’ve got rotten side effects Helen. I really hope I’m up for meeting you all soon. Love to you all xx

Member

Re: Support group for secondary BC hampshire/Winchester?

ahh Yes totally understandable Carine, hope you get good results soon. Sorry you’ve got some horrible side effects Helen wishing you well soon. 

Hopefully we can all get together next month. Haven’t heard from Judy but hopefully she’ll pop on here to see we are not meeting up today.

 

love to all 

Julia x 

 

Member

Re: Support group for secondary BC hampshire/Winchester?

I'm still in that in between scan and results time so feeling a bit weird. If it's only 2 of us I'm probably not very good company. I have Goserelin and Denosumab injections today. I'll check back at lunch time what plan us

Member

Re: Support group for secondary BC hampshire/Winchester?

Really good results Julia, very pleased for you. 

I won't be able to make it over today, started EC last Thu & have had a pretty horrible week with various side effects. Been suffering from dizziness and vertigo. Blood pressure is absolutely fine though - a mystery!

Enjoy your day with your daughters Nicky .

How are you doing Carine & Judy? Sorry to miss you all today.

Take care, Helen x 

Member

Re: Support group for secondary BC hampshire/Winchester?

Hi all, just checking in to see if anyone else is still going to meet up tomorrow (Wednesday 27th). I still can if anyone else is around. 

I’ll check back on here either later tonight or tomorrow morning.

I had my scan results the other week and they were good as I’m NED (no evidence of disease) so a very happy bunny. Hope everyone is doing well and feeling ok.

 

Much love

Julia X 

Community Champion

Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

I've just logged on to say that I won't be able to meet up this Wednesday although it looks like it may not be happening anyway. If you do get to meet up I hope you have a good chance to chat.  I'll look out for suggested dates for April.

Nicky xx

ps I also just re-read my last post and realised there were a few typos! Especially 'fingers corpses' Ha ha. This comes of using my ipad and it making rather silly auto suggestions/corrections.  I must learn to re read what it has done to my bad typing!

Community Champion

Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

Im playing catch up having been away for a couple of weeks. Although the posts haven’t been on this thread I’m sending positive thoughts toHelen, Jools and Corinne for scan or test results. I’m due my next scan next week with results a couple of weeks after, fingers corpses for me as well.

I will keep an eye on this thread but I may not be able to make 27th now. I’ve got a couple of busy weeks coming up, mainly down to family birthdays plus our youngest daughter is going to be back home for a few days that week so I’d like to spend time with her as it’s so difficult to do given her job (as a chef). If I can make it I will but I’ll let you all know one way or the other earlier that week once I know all my plans.

Take care all

Nicky x

Member

Re: Support group for secondary BC hampshire/Winchester?

Hi ladies 

was great to see you all. Good luck with your scan Jools. I’m good for 27th of March shall we make that a date?  Hope you all have a great weekend. 

Judy xx

Member

Re: Support group for secondary BC hampshire/Winchester?

Hi everyone 

Was good to see you all last week. I can only make Wed 27th Mar so hope that would be ok with you all. 

Helen x 

Member

Re: Support group for secondary BC hampshire/Winchester?

Hi everyone

Lovely to see you all last week. I can do March 6th, 20th and the 27th. I don’t mind portsmouth or Winchester.

I have my scan this Sunday results on 7th March.  Keep well everyone.

 

Love Julia X 

Community Champion

Re: Support group for secondary BC hampshire/Winchester?

Hi

At the moment I can do both 20th and 27th but not the earlier Wednesdays.

Btw Wednesdays suit me the best as I seem to have fewer other things going on in the middle of the week.

Nicky x

Member

Re: Support group for secondary BC hampshire/Winchester?

I can do any Wednesday in March. So that's 6th, 13th, 20th or 27th. 

Community Champion

Re: Support group for secondary BC hampshire/Winchester?

Lovely to meet up with you all on Wednesday.  I think we timed the meet up just right, in between snow last week and heavy rain and strong winds this week.

Hoping all of you who have scans coming up soon get good results.

Hopefully we can sort out another meet up towards the end of March?  Apart from my hols I have a few birthdays and other dates (and scans etc) to work around.  Maybe if some dates can be suggested for the end of the March we can agree one with plenty of notice this time?  As I'll be away I may not be able to log on and sort this out so if someone else can put some dates up we can all say which suits us best? Meeting place can be Portsmouth or Winchester if that suits us all.

Nicky x

Member

Re: Support group for secondary BC hampshire/Winchester?

See you next Wednesday. 

Helen x 

Member

Re: Support group for secondary BC hampshire/Winchester?

Spoiler
 

Hi all

yes i can make Wednesday 6th Feb. See you all there.

Julia x  

Member

Re: Support group for secondary BC hampshire/Winchester?

I’ll see you all on Wednesday 6th 1.30. Really looking forward to catching up with you all xx