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.
Thanks, Helen x
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
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
Will try to be there ladies but very sleepy at moment. Recovering from never ending poorly chest infection. It’s getting me down xxx
Sorry to hear about your toothache Nicky, hope it's sorted out soon, will miss you this afternoon.
I will be there for 2pm.
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
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.
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
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 😊
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.
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.
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
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
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
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
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
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.
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.
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!
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
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.
Was good to see you all last week. I can only make Wed 27th Mar so hope that would be ok with you all.
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
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.
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.
I’ll see you all on Wednesday 6th 1.30. Really looking forward to catching up with you all xx
As 4 of us have replied already and can all do Weds 6th Feb shall we say that is definite?
1.30 in the Spinnaker Tower Cafe, Gunwharf, next Weds. We will be there for at least an hour so come along later if you can't get there by 1.30. Please can you all check this message/thread just beforehand to make sure there's been no changes.
Looking forward to catching up, it's been a while!
Im not sure if the Southampton meet up is happening but unfortunately I can’t make any date this week due to some other commitments that have come up. Hopefully it does take place.
I’m going to suggest a few dates in Feb though to get the ball rolling with that, and meeting up again in Portsmouth as it’s easiest for most of you as you all live near there.
I am free next week except for Monday (5-7th) and all of the following week (11-14th) plus possibly a couple of days the week after (18-20th). Maybe you can all say what day/s are best for you so we can sort a date when the majority of us can meet. I haven’t included Fridays for me as I do find the traffic too busy driving home, whatever time I leave! And there will be days in the weeks I’ve mentioned that I will become busy on, but so far haven’t committed to anything else just yet.
Anyone with secondary BC is welcome to join us it’s not restricted to Hampshire but as we all started off meeting more centrally in Winchester we called the thread what it is. We generally meet at 1.30 in the cafe at the base of the Spinnaker Tower if we are in Portsmouth but don’t have a set place if we meet up in other towns.
Lets see if we can get something organised 😊☕️🍰
I’m sorry I’m going to pass on the meet up in Southampton on 28th as it’s not so great to get to. Hope your wobbles have eased Dragoncarine.
I look forward to our February meet up.
love to you all
I was about to post on here with some suggestions of dates and then realised that there’s been plenty of activity since I last read the thread when Judy replied to seza last week.
Unfortunately I can’t do 21st or 28th either Winchester or Portsmouth. I could probably get to either on one of the other days mentioned 29, 30 or 31 but not sure at this stage which ones I would be free on as I’m still popping in on a regular basis to my Mum (my Dad died unexpectedly in October which is why I couldn’t make the last meet up)
If not I am relatively free (give or take days for treatment, visiting Mum and baby sitting my grandson!) so would hopefully be able to meet up in February.
As an update from me I’m still on fulvestrant (and Denosumab) so my treatment is pretty easy in comparison to what I have been on over the past 3-4 years, something I didn’t think I’d ever be able to say again. My latest scan results were all stable although one very small lymph node had grown a millimetre or two. My liver is still NED (no evidence of disease) since my resection last April which is the best news to start the New Year with.
Hipe to catch up with you all soon but it will have to be 29th or later, or February now.
Hello everyone, welcome Seza sorry you’ve found yourself on here but this little meet up group is lovely and hopefully you will find it very helpful too. We usually meet in Gunwharf at the Spinnaker Tower cafe but I think next time it will be in Winchester. I hope you can make it it would be lovely to meet you.
Hopefully the other ladies will be along shortly but these are the dates this month I’m free; Monday 21st, bit short notice though I know, then 28th, 29th, 31st January.
Love to all, look forward to our catch up.