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Support group for secondary BC hampshire/Winchester?

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Re: Support group for secondary BC hampshire/Winchester?

Hello lovely ladies,

 

Not sure if I can make Thursday 9th March yet - I am starting on eribulin some time soon & Thursdays is my treatment day. I will let you know.

 

Went to the Marsden yesterday for a 2nd opinion with the Professor. I am so glad I did, what a lovely oncology team, I came out feeling much more positive and gave some bloods for a possible trial. It was reassuring that the onc said exactly what mine has & was in total agreement with my treatment so far. Let's hope eribulin does the trick now. Beanbob - are you still doing ok with it?

 

Take care everyone, love Helen x

 

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Re: Support group for secondary BC hampshire/Winchester?

I meant March! Holding 9th safe as can be (oncologists permitting) Love beanbob X 

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Re: Support group for secondary BC hampshire/Winchester?

Morning all,

yes I thought we were talking March as well Nicky.

 

Thats great Maldives, we can arrange time as you say nearer the day. 

 

Helen and Beanbob hope you both ok.

 

Love to all

 

julia xx 

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Re: Support group for secondary BC hampshire/Winchester?

Just had a thought, in the middle of the night of course, we are talking about March 9th aren't we? Reading back on Beanbobs original suggestion of dates I took it for March (not Feb which has the same calendar as March).

Just checking. If it is March then I'm OK and we can all update nearer the time to check who is still able to come.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi julia
That woul be great. We will get closer to the date and can sort out times ect. X
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Re: Support group for secondary BC hampshire/Winchester?

Hi Nicky and Maldives 

The 9th is good for me.

 Maldives I get off the Gosport ferry right by the train station so I could meet you outside the station if you like?

 

julia Xx 

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Re: Support group for secondary BC hampshire/Winchester?

Hi sue/maldives

We currently meet at the cafe at the base of the Spinnaker Tower in Gunwharf Quays, Portsmouth. As far as I'm aware the train station is a very short walk but as I've not used it I can't say for sure. 

I was about to say keep an eye out for the dates but I've just realised I can no longer do 15th as I have been told by my daughter that her graduation is on that day. Therefore can we all say 9th?  If that changes nearer the time we can post on here. If I'm the only one who can't make 15th then there's no reason for everyone else not to meet then instead.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

I could do 15th if thats the most popular.
9th looks promising too. X
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Re: Support group for secondary BC hampshire/Winchester?

Hi i could do any except 15 & 16. So 9 & 10 are better for me too. Where are you meeting? Is it near a train station ? I will get train from poole then a taxi to meet up. Looking forward to meeting you all. Sue x
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Re: Support group for secondary BC hampshire/Winchester?

Hi all,

i could do the 9th or 15th. Hope things are going well for everyone.  Scan for me next week 😬 Already feel fluttery in my belly thinking about it. 

 

Night night all x 

 

julia 

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Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

Yes, it was good to catch up with you all. A bit of a difficult drive home though with the fog continuing up into Hants but hey ho. I may get the train next time!

Thanks for suggesting some dates Beanbob. I can make 9th (treatment on 10th) and then the following 15th or 16th March. 

Lets see who else can make it and if anyone else in Hants or surrounding areas would like to join us either in Portsmouth or elsewhere if they say where they can get to. At the moment it makes senx

se to keep it there until we hear otherwise as it is the most accessible place for ladies who currently have said they can meet up.

Nicky x

ps good luck with all treatments. And, yes I did get lots of info from the Prof but can I write as quickly as he says the drugs? The answer is no, I can't! I will just have to wait until I get his letter detailing what was said to know what he was talking about!

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Re: Support group for secondary BC hampshire/Winchester?

A lovely afternoon. Thank you girls for your support always.

Julia, great to meet you! Helen, good luck with the next steps and Nicky hope Dr J gives you lots of info. MAldives, hope to see you next time. 

 

As for a next date, what about 9 or 10 or 15, 16, 17 March?  

 

Love Beanbob xxx

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Re: Support group for secondary BC hampshire/Winchester?

Hi helen
Sounds like you had a fun afternoon on monday. I was glowing. Radioactive.
Ive had so many scans the last few days they think im staff lol. Good news they found a brain. No mets thank goodness. Me too in limbo but what can you do. Looking forward to next meet up xxx
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Re: Support group for secondary BC hampshire/Winchester?

Hi Nicky, Helen and Beanbob

thank you for a good afternoon on Monday and great to meet you Beanbob. As always I learnt a lot and You always leaving me  feeling positive, so thank you.  I wish you all good results and hope you hear about your biopsy soon Nicky, and if you are going to ask for one Helen.

 

still a bit foggy here today, so I'm about to strike out into the fog with the dogs.

 

Hope we can all meet up again soon

 

lots of love

 

Julia X 

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Re: Support group for secondary BC hampshire/Winchester?

Thanks for a lovely afternoon yesterday, it's always good to meet up with you all. We certainly had some good information sharing which I find so helpful, thank you.
See you very soon.
Helen x
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Re: Support group for secondary BC hampshire/Winchester?

Morning all

i hope everyone is well,I'm  looking forward to meeting up today.

safe journeys everyone in the freezing fog.

love Juliaxxx 

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Re: Support group for secondary BC hampshire/Winchester?

Hi everyone

Looking forward to Monday's meet-up, 2.30pm. Shame you can't make Monday Sue but will be lovely to have another cyber friend come along next time.

I am in limbo again with treatment Smiley Sad - need some positive thoughts.

See you Monday, Helen xx

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Re: Support group for secondary BC hampshire/Winchester?

Thanks nicky. I live in poole so i can jump the train. I will keep an eye out for next meeting. Xxxsue
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Re: Support group for secondary BC hampshire/Winchester?

Hi sue

The more the merrier! We have at times been a very large group but over the years unfortunately have lost many of our friends to this horrible disease. Currently the location has been Portsmouth due to the location of a couple of the group and work commitments. However we used to meet regularly in Winchester, Southampton and Alresford so it can be wherever the majority can get to. We don't have a set day that we meet but arrange the next one amongst us when we have met up. One of us will post on here about suitable dates and also location/s. If you can say where you are roughly based we can see if we can move it to a more central Hants location for at least some of the time.

Of course any other Hants ladies and/or those living in surrounding counties who can travel to where we meet are more than welcome.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

hi ladies I would love to join in with your meet ups. I have BC and secondary bone, liver and sternam mets. Could I possibly make the next meet up, cant do 23 as I have a bone scan which takes all day.
It will be nice to meet up with some positive bubbly ladies. I went to one group and it was so depressing I never went again. that was 3 years ago. now here I am.I wont be offended if you want to keep it to your origional group. sue x
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Re: Support group for secondary BC hampshire/Winchester?

Happy New Year from me as well. It looks like we will have a lot to talk about on Monday! Looking forward to catching up with you all.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Happy New Year girls -

I'm looking forward to seeing you all next Monday 23rd. Crossed fingers, there's no reason to expect any surprises (though I have had a few unwelcome ones this month - will update you then)

Love Beanbob x

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Re: Support group for secondary BC hampshire/Winchester?

Sorry I have not Been able to meet you all very often it's been a difficult time bug wise still bed at the moment with chronic chest infection just wanted to wish you all a Happy Christmas. Xxx
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Re: Support group for secondary BC hampshire/Winchester?

Looking forward to seeing you on Jan 23rd.
Hope you all have a restful Christmas free from any ongoing side effects. Thank you for your support my friends.
Love Helen xx
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Re: Support group for secondary BC hampshire/Winchester?

Oops, that was supposed to say " Merry Christmas" to you all, xxx 

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Re: Support group for secondary BC hampshire/Winchester?

Morning all

yes I can make 23rd thank you Nicky.  Look forward to seeing you all again and hopefully meeting you Beanbob.  Merry Christ as to you all, I hope everyone is doing well.

 

love Julia

xxx

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Re: Support group for secondary BC hampshire/Winchester?

Shall we go for 23rd? I think you've told me you can't do 19th now Helen?

We can confirm numbers nearer the time and arrange a different venue/time if we have to change it.

In case I don't get back onto here before Christmas I'm wishing you all a lovely time with your family and friends and hope we can all enjoy it.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hello everyone

Very quick reply as I am just off to hospital for Kadcyla - I am free 19th & 23rd Jan so just let me know which we want to do.

Hope you're all ok & coping with everything at the moment.

Love Helen xx

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Re: Support group for secondary BC hampshire/Winchester?

Great news Beanbob, that must make a huge difference to how you feel in yourself and also enable you to relax over Christmas - and enjoy it!

I've had my heart appointment yesterday and all looks fine to start the new treatment this Friday - hoping all else is fine when the blood results are done before my consultant appointment.

Great to hear from you too, Julia, and glad you are recovering.  Some of these colds and coughs are taking a while to shift, mine certainly did.

Looking at the dates you both have given shall we go for the Thursday (19th) and wait to see if Helen is free then.  If not I am also free on the 23rd as you two are and can see if Helen is if she can't make the 19th.

I will post up the full details of when and where once we all have replied so anyone else in the Hants area with SBC can come along as well if they would like to join us.

Good luck with the scan next week Helen.

Have a Happy Christmas everyone if I'm not on here again before then.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi Nicky, Helen and Beanbob

im so glad you all had a excellent afternoon. I'm just about over this pesky cold, hanging around in the form of blocked ears which unfortunately leads me to shout rather than speak in a normal voice! Rather like a deaf great aunt 😉.  So glad all going well for you Beanbob and look forward to meeting you next year. Yes cabinet safely in place and full of more old cronk Nicky, skipping around when it arrived. Been to a Christmas tree festival this morning, full of trees decorated by local people, clubs etc. came home bursting with ideas to add to our home tree, although OH not so keen on the driftwood pieces idea, I loved it and I've snuck some on already, he's not noticed 😂😂.

i would love to meet up in January, I have treatment on 9th, but I'm free 11th, 12th, 16th, 18th, 19th or 23rd.

 

keep well ladies.  

 

Love to all

 

Julia xxx 

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Re: Support group for secondary BC hampshire/Winchester?

Hi Nicky and Helen

Such a lovely afternoon with you two on Monday. Really special and so honest.  So helpful.   I also had good news yesterday - the eribulin has kicked in after one cycle and all relevant blood results are heading downwards fast. Love that too!

I would love another date in the diary.  Since week of 9th is my week off I am actually away all week.   But these are dates I can do in January? 

Thurs 19th

Mon 23rd 

I realise that's not many (blame my art foundation course!) so if you can't do them I'll skip out for the next meeting and join you in Feb/March.

And hoping to meet Julia then too

Lots of love, ho ho ho and all that 

Beanbob xxx

 

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Re: Support group for secondary BC hampshire/Winchester?

Hi Helen and Beanbob

It was lovely to have a good catch up yesterday afternoon and what lovely weather, a lot milder than where I left from at the top of Hampshire!  It was good to unload a lot of our fears about recent treatment changes and, as we all said, how nice to chat about these to people that understand without the burden of offloading on family.  Sorry, again, that you couldnt join us Julia but I hope the new kitchen addition is taking pride of place and helping you get over your cold!

As at present we seem to be the only ladies able to meet up regularly and can all get to Portsmouth we should all try to meet up again early in January, as we all said.  The first week of Jan is a busy week for all of us (if my calculations are right) as we will all be having treatment.  How about the following week - w/b 9th Jan?  Same time and place - just say which day is best.  Reply on here if you can make it once you know or nearer the time.

This is open to ALL Hants ladies (with SBC) and it would be lovely to meet some new ladies if you are thinking of joining in.  If anyone can't make it due to location please say where you can meet and another location can be suggested - Hampshire is a fairly big county so this current meeting place in the far south won't be convenient for all.

Take care and have a great Christmas.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

Sorry you won't be there Julia but, having just got over a stinking cold myself I know how you will be feeling, and about passing it to any of us. We will have to make a date that we can all meet up in the New Year. Like the sound of your 'new' kitchen addition - very retro! As you have read/said, I am now back to Plan A which means starting Kadcyla next week. The MRI showed a few more lesions (small enough that the CT didn't spot them) so surgery isn't an option and obviously H and P wasn't holding any of it at bay, it was just the larger lesion that had showed some growth and was picked up by the CT. Will be discussing all the SEs with you later, Helen!  

Hope you make it by 3 Beanbob, but don't rush too much I'm sure we will be there for a while after 3.

If any other SBC ladies in the Hants area, or further, would like to join us please PM me before 12 (as I may leave early) I can then give details about who to look for and where we will be.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Actually now going to be down there for 2.30 after all.
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Re: Support group for secondary BC hampshire/Winchester?

Take care of yourself Julia. Sorry not to meet you yet.

 

Nicky, Helen, I'm still planning on racing down once my golf is over, arriving about 3 if the traffic in Portsmouth is good to me. 

Love beanbob X 

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Re: Support group for secondary BC hampshire/Winchester?

Hi Helen and Nicky

i don't think I can come tomorrow 😔 I've woken up with sore throat, a nose that won't stop running and feeling coldy I don't want to pass my germs onto you, I know your starting your Kadcyla soon Nicky. I'm very disappointed as I really wanted to meet up again.  I hope your all doing well. Today I'm waiting in for delivery of my vintage 1940s kitchen larder (yes the type folk use to chop up for fire wood not long ago), but I am a vintage gal and I fell in love with it (raised eyebrows from OH) 😂. I do pop on here most days, but don't always comment, I see your back to plan A Nicky - a very good plan it is and I hope you don't get too many SEs with it. I don't know much about Kadcyla. I hope your continuing to do well Helen. I'll miss you gals tomorrow but hope we can meet up again in the New Year. 

 

Love 

Julia x 

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Re: Support group for secondary BC hampshire/Winchester?

Hello lovely ladies
I will be there Mon 5th, hope you can make it
there Beanbob. I have had progression in liver again since we last saw each other and I am now on Kadcyla, this disease certainly keeps on giving! Hope your treatment is helping & you can make it to Gunwharf ok.
Looking forward to seeing everyone.
Love Helen xx
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Re: Support group for secondary BC hampshire/Winchester?

Hi Nicky, Helen and other lovely girls

I am meant to be playing a golf match that morning so I am not  sure If I will make it. Meet up is in the diary however because weather could disrupt my plans and so could my health (I have started eribulin chemo and so far, so good but who knows what might happen?).  Very much hoping to see you

beanbob xxx

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Re: Support group for secondary BC hampshire/Winchester?

Hi Nicky and Helen 

5th dec at 2.30 is good for me. 

 

Love julia x 

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Re: Support group for secondary BC hampshire/Winchester?

Hi marye123

Nice to hear from you. We are based far and wide in Hampshire so tend to meet where we can! We started off in Winchester as most of us were able to get there but now the group is a lot smaller, sadly, so have tended to make it either the very south ie Portsmouth or further north.  The latest meeting we have been talking about is in the cafe at the bottom of the Spinnaker Tower, if anyone else is interested in another location it's best to say where they can meet eg Winchester, Basingstoke, Andover.  Anyone in Hants with secondary BC is welcome to come along, it's not a closed group at all!

Hi Helen and Julia.

I can make Monday 5th Decembwr as well. Shall we say 2.30 at the cafe in the Spinnaker Tower? If any of us can't make it nearer the time we can post on here or phone/text.

Anyone else wanting more info or to join in please either post on here or you can send me a PM.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Can you just turn up and where are the meet ups held thanks 

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Re: Support group for secondary BC hampshire/Winchester?

Hi all

Would be lovely to see you again, and any others who may be coming along. I can do Monday 5th or Thursday 8th.  

 

Love to all

Julia X 

 

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Re: Support group for secondary BC hampshire/Winchester?

Hi everyone,

Would be lovely to meet up before Christmas. I am free on Mon 5, Tue 6 or Wed 7 Dec from 2.30pm - can come across to Gunwharf. This will be week 2 into 3 on the Kadcycla cycle so I should be pretty ok, fingers crossed!

Love Helen x

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Re: Support group for secondary BC hampshire/Winchester?

Hi Hants ladies.

Well, after a roller coaster few weeks I'm hoping we can sort out another date to meet up. Several of us have had changes to our treatments which of course means it's difficult to arrange a suitable time to meet as we are involved with more appointments and also more side effects!

At the moment I am not changing my treatment, which I had thought I would be, so know that my normal routine of every 3 weeks into hospital for my iv drugs is staying as it was. However other ladies may have different dates now that will affect when we can meet up.

My thoughts are to try to get a meeting, or two, before Christmas.

With that in mind one in Portsmouth for the southernmost ladies and one more central.

I can probably make most M, T, W but will keep T and F free to allow for appointments.

The weeks beginning 28th Nov and 5th Dec are best for me but not sure how they fit in with everyone else?

Can you update on here if you are interested in catching up and we can try to get at least one meeting sorted?

Beanbob I will be in touch separately regarding your email.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi Nicky and Helen

it was lovely to meet you both yesterday, thank you for answering my questions too. Two lovely ladies.

I'd love to meet up again, I don't mind hopping on a train to further afield places to meet others as well. Have a good holiday Nicky, and everything crossed for your scan Helen.

 

love to all

 

julia x 

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Re: Support group for secondary BC hampshire/Winchester?

Hi Helen and Julia

It was lovely to meet up yesterday and weren't we lucky with the weather? A nice chance to get some sea breezes for a land lubber like me! Great to meet you Julia and let's hope it helped talking with Helen and me - who have had a longer 'journey' with SBC and therefore probably in a stronger place mentally than where you are right now being more recently diagnosed/treated. However you looked great and are coping so well - good for you.

I will come up with some other dates both South and North/mid Hants in the next few weeks, maybe for the last week in October, which more ladies can get to as well.

GOod luck with the scan Helen - well, the results! Fingers crossed and all that.

Take care

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Thanks ladies for your messages. See you at 2.30 and if anyone ese wants to join us the venue is Gunwharf Quays, Portsmouth, Spinnaker Tower cafe.

I will try to remember to text you Julia with what I will be wearing so you know who to look out for!  I havent decided yet as I'm still in  my scruffy walking jeans, about to go out for a walk.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi Nicky 

yes just confirming I can still make tomorrow, looking forward to it.

 

safe journey 

 

julia x 

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Re: Support group for secondary BC hampshire/Winchester?

Hi, I will see you tomorrow afternoon, looking forward to it. Helen x
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Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

Just checking in to see who is meeting tomorrow? Julia has confirmed and just waiting to hear from Helen. Can you both confirm (again, Julia) by tomorrow morning that you are both still able to make it? I'm only asking as its a long drive for me and I will be leaving before lunch to allow enough time.

Sorry you can't join us this time Beanbob - good luck with the new treatment and also sorry you can't Mara. Will be in touch with you both about other possible meet ups either as a group or individually if we can't all make one place.

Nicky x