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Support group for secondary BC hampshire/Winchester?

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Re: Support group for secondary BC hampshire/Winchester?

Week beginning 5th good for me ladies too xx

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Re: Support group for secondary BC hampshire/Winchester?

Hi all

Hope you are all doing well. Dates I can do in Feb are; week beginning 5th Feb, but not the 7th.

Then I can do the from 13th until 22nd. 

Be lovely to see you all again.

take care

love

Julia X 

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Re: Support group for secondary BC hampshire/Winchester?

Helen

 

 

have sent you a pmxx

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Re: Support group for secondary BC hampshire/Winchester?

Nicky have sent you an urgent pm
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Re: Support group for secondary BC hampshire/Winchester?

 Hello I may break the mould and look for holidays in hot places ! Week beginning 5th of February is good for me, Monday and Tuesday are my best days. Be great to meet up again everyone. X

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Re: Support group for secondary BC hampshire/Winchester?

I can't do either 18th or 30th Jan - so week beginning 5th Feb would be better for me - Wednesday 7th would be ideal as I have day booked off work that day already. Iceland was fantastic - we'll have to compare photos!

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Re: Support group for secondary BC hampshire/Winchester?

What is it with Iceland and this group?  I'm off there with my daughter next week as she has some time off and has always wanted to go, as have I!

Going on the dates so far it looks like early Feb might be best as not everyone can make any particular week/date in January.

I'd prefer not to travel down to P'mouth on a Friday as the traffic is alway busy on the way home but so far can make all days in the week beginning 5th Feb.  Maybe we can come up with a date that week?  If not any of you can arrange to meet up in Portsmouth at another time, as you are all very local to there, but I probably won't be able to make it sooner than that week in Feb.  Feel free to sort out an earlier date if you'd like to get together sooner than Feb.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

 
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Re: Support group for secondary BC hampshire/Winchester?

Hi everyone,

happy New Year 

Got back from Iceland last night. Totally loved it. My sister had booked with an extreme off road company so we ended up scaling volcanos and going to the top of glaciers in superjeeps scaling the rest on foot. I am already planning my return this year with husband this time.  

 

Dates in jan I can do are  18th, or 23rd, 24th, 29th,  30th Jan. 

 

So pleased you are booked into Penny Brohn Carine and that you enjoyed it Judy. I’m back there in March.

Have a lovely time in Paris Helen, hopefully see you this month.

 

love to all, keep well. 

 

Julia Xx 

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Re: Support group for secondary BC hampshire/Winchester?

Happy New Year to everyone. I am in Paris 19th-24th so I can only really make Thu 18th and Tue 30th with my chemo days etc etc. If that fits with anyone else that's good but if not, no worries, I will see you at a later date.
Hope Iceland was amazing Julia and Carine. So pleased that many of you have taken the decision to attend Penny Brohn - it is very helpful.
Take care, love Helen x
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Re: Support group for secondary BC hampshire/Winchester?

Hi Ladies I’m at Penny Brohn it’s my last day today. It’s been great and will definitely come back for the follow up course. End of January will be good for me. Hope everyone is keeping well. I had a failed liver biopsy so just waiting for another one. PET scan showed no further mets than liver but still anxious to start some form of treatment x

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Re: Support group for secondary BC hampshire/Winchester?

I have CT scan on Monday 29th Jan, so would prefer not too near that date if possible - preferably the week before?

Just had a look on Penny Brohn site and booked myself on for Feb Half-Term (13th to 15th Feb) as you all made it sound worthwhile.

PS Enjoy Iceland Jools - we're just back and loved it, so glad I went.

 

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Re: Support group for secondary BC hampshire/Winchester?

Happy New Year to all Hants ladies - especially all of those who managed to meet up in November.

I've not put up any suggested dates yet as I think Helen is away at some point in Jan and I'm hoping to have a short break with my youngest daughter, also in Jan, so I haven't got a full list of who is availalbe and when.

If anyone wants to suggest a date based on what the replies so far have been please go ahead and as many ladies that can make it can meet up. Otherwise I will suggest a date later in the month when I think most of us should be back from any trips.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

 

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Re: Support group for secondary BC hampshire/Winchester?

Hi everyone,
Firstly I would like to wish you all the best for 2018 & hope that your treatments work for as long as possible. Today marks my 5 year cancerversary since the double whammy BC and bone mets. I added liver mets in 2014. Thank you for your support on the forum, It is a lifeline to me. A special mention to Nicky - you have been amazing, thank you.
Have a peaceful Christmas lovely ladies.
Helen x
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Re: Support group for secondary BC hampshire/Winchester?

Hi all

was lovely to see you all on Tuesday, and meet you Judy and Kizzy.  I’m so pleased Judy about you booking the PB course, it really is so worth it. 

The dates I can’t do in Jan are 2nd (treatment day) or the week beginning 7th January (off to Iceland ☃️❄️) or 22nd Jan (treatment day).  

 

Hope your MRI went ok Dragoncarine and Judy you get your treatment plan soon. 

 

Love to all

Julia X 

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Re: Support group for secondary BC hampshire/Winchester?

Was lovely to meet you all yesterday, what a lovely welcoming group of ladies you all are. I left feeling positive, enlightened and ready to do battle! My head is still spinning with all the treatments you’ve had. I’ve booked myself on the 2 day PB residential well being course so not available 2 to 4 of January (hope you get the same dates Kizzy) so I’m unavailable then. Merry Christmas and Happy New Year to you all and really looking forward to meeting up with you all again in the New Year x

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Re: Support group for secondary BC hampshire/Winchester?

Hi

I was lovely to meet up with everyone yesterday and to have kizzy and Judyw47 join us - even though, as with everyone, we'd rather not be meeting as a group of ladies with secondary BC as our common denominator!  Sorry I didn't see your message yesterday kizzy as I had left home much earlier, we'll have to try to sort out a way of being recognised for any one else in the future who joins us.  I guess it's quite good that we don't stand out amongst the crowd as all having SBC! But it makes it more difficult to identify with us. I do try to keep an eye out for anyone who comes in and appears to be looking around but it was very busy in the cafe yesterday so I missed seeing you and Judy before you had to come over and introduce yourselves.

Well, it was lovely sunny weather, what a treat and I hope everyone got back home OK. The drive home for me was not too busy but as I approached Winchester it looked like the end of the world was coming with a huge black rain cloud ahead!  Luckily I just managed to get past without the rain getting too bad and it was much brighter after that.

As we won't meet up before January now I'll wish you all an early Happy Christmas and will add some dates on here in the next few weeks.  If anyone has already got dates they definitely can't make can you add them now so we can all work around those?

Good luck with scans and 'procedures' etc that some of you are having.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi. It's Kizzy. How will I know who you guys are at the spinnaker?😊
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Re: Support group for secondary BC hampshire/Winchester?

planning on leaving Romsey at 12:30 - so should be there, taking the winter bike for a whoosh down the M27 :-)

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Re: Support group for secondary BC hampshire/Winchester?

Looking forward to meeting you all today. See you all at 1.30 pm x

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Re: Support group for secondary BC hampshire/Winchester?

Yes, looking forward to it as well. Weather is looking nice for a bright afternoon so it shoukd make everyones travel a bit better.

See everyone later, 1.30 at the Spinnaker Tower cafe (or later if you can't get there by then)

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi everyone
Looking forward to seeing you all tomorrow.
Helen x
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Re: Support group for secondary BC hampshire/Winchester?

Hi Nicky and Carine. If only it was that easy.After being diagnosed , having Radio and seeing the onc, who comes over from Southampton i was told that i had extensive bone mets, ok , bad enough!!,but as my onc. said on a positive note -You dont have it in your organs. This was after a year of fighting to get my doctor and hospital to listen. 3 stone lighter size 14 down to baggy size 6!!, continually throwing up ,coughing up white sticky glue stuff , being unable to eat much and 10 months later, a trip to AE revieled the diagnosis. After going on Letrozole i was told i would have a scan and another appt in 3 months this brings me to May,. at this point i was told i was -stable.                                        At the next appt in July I was told the recent scan showed i had it on my liver so i went on Exemestane/Aromasin. all this time i am on Morphine, antisickness ,in pain and spending a lot of time in bed. the onc was going to see if the liver surgeons could blast the cancer and did a liver scan that week, i was hoping to hear the following week only to find out my onc has gone on hols till Aug! this went on for 5weeks,phone calls, not getting anywhere with anyone, in the end my son took me to see a private liver surgeon who told me the scan showed the liver cancer was there at on the AE scan in January.                                                               now i have been put back on Letrozole, because i was stable when they swapped so they dont know which drug was working, now i have been waiting nearly 4 months to have the next scan and see the Onc .When the Onc agreed to get the 1st scan looked at again by someone who knows thier job they also found it on my lung. To be honest they dont care, i dont trust their treatment so will have to up my game and get informed.It has only been the last 3 weeks after a complete change of pain meds that i think i was allergic to that my pain has been controlled, ive stopped being sick and have regained some quality of life. Its taken 10 miserable months to get to this point, but on the brighter side im still here and getting a bit of fight back. my next scan is next week followed by Onc visit the week after 29th nov. chemo is on the cards so i would like to get it in my head what options i have and wether to go there. 

    The whole year previous to this i was and still do suffer PTSD and aniexety, only letting you know this so that if i can fight my demons to get over to meet up, you may well see a frightened rabbit type person hovering for a while.!!! xx

 

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Re: Support group for secondary BC hampshire/Winchester?

Hi Kizzy

It sounds like you are very hormone positive, which would have been the case with your primary and why you are now on hormone treatment (plus a bone strengthener, Denosumab).  This is pretty common treatment as it tends to be kinder in overall side effects, although there will always be some.  You should be scanned after a few months to check how it is working.  Although with any diagnosis of breast cancer we immediately expect to have chemotherapy this isnt always the case.  Often, especially with hormone positive secondary BC, they will save the 'big guns' for another time.

I understand you are not familiar with computers (you've done great so far by the way!) if you look into one of the other headings in the 'Living with secondary breast cancer' section either on the front page of the Breastcancer Care website under 'Forum' you can see other 'threads' (ie headings with information other ladies have written) which talk about treatments etc.  If youre unsure how to do this (I'm not sure how you have accessed this 'thread' - either directly or a general google search) we should be able to help you if you do get to our meet up.  You can discuss/ask questions in any of the threads relevant to you once you've found them and more ladies are there for support.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Sounds like you have a lot to deal with. I found too that the Breast Care nurses seemed to vanish after the initial meetings. I have bone mets on sternum, ribs, shoulder blade, upper arm, skull & lung mets and a small lump in the skin on my chest. Initially they thought liver too but now seem to have discounted that. I was surprised that there wasn't any intensive treatment offered. I'm on Tamoxifen & Goserelin, which as far as I understand are starving the cancer, hopefully back onto Denosumab soon (stopped for tooth treatment). I did have one shot of radiotherapy on my arm because it was getting difficult to dress & undress - but I had to ask several times. I'm quite lucky in that the oncologist I see (at the General in Southampton) explains things really clearly in a  way that I can understand.

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Re: Support group for secondary BC hampshire/Winchester?

  jools, Nicky and Carine, lovely to hear from you. I feel quite emotional knowing i can talk to those who understand. This is the second time ive written this, it all just disapeared a minute ago. sorry im computer illiterate dont have a clue if what im doing is right but i need to get support and info on treatments. i dont hear a thing from breast care nurses and have be handed to the palative care team at the hospice, which seems to be pain control, Denusomab jab and of you go.!!! i have thigh, hip, upper arm,rib,

spine, skull, liver, lung mets and a mass on my sturnum. Apart from radio in feb i have just been on Letrozol  and Denusomab. is this normal? or are pennies being saved? thanks for the invite to the group meeting and if my body lets me i will try to get there . Although i truly feel sad for you all, only those who have walked in your shoes can get it!! ThanksXX

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Re: Support group for secondary BC hampshire/Winchester?

Enjoy the course Julia, would love to hear about any tips or information that you think would help any of us. Maybe you can give a presentation on 28th 😉.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi Kizzy
Sorry you’ve found yourself on here, but stick with this forum it will help you. I hope you can make it to our meeting on 28th, I’m sure it will make you feel a heap loads better.

Nicky and Helen; I’m just leaving for a two day residential course at Penny Brohn, OH says I’m not allowed to take my sewing machine 😘.

See you all on 28th. Thank you for organising it Nicky X

Julia X
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Re: Support group for secondary BC hampshire/Winchester?

Kizzy, sorry you have to join us in the secondaries group but you are more than welcome to come to our next meet up, as are any secondary ladies. We chat about all sorts of things as well as the impact this disease has on our lives. Therefore it can be quite open!

As we've now had yeses fro pm everyone it looks like we are on for Tues 28th. We meet in the cafe under the Sinnaker Tower and looks like 1.30 suits everyone, if you can't get there by then were usually around for a couple of hours so don't worry if you're late. I think there will be 5 of us, plus you, so we will look out for you. This isn't an organised as such meet up, just ladies in the same situation who live around the Portsmouth/Hants area therefore there's never a format, we just chat! Oh, and have tea/cake/sandwiches depending on what we fancy.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

I was diagnosed 6 months ago (April this year), 11 years after "completing" my treatment (surgery, radiotherapy & chemotherapy). I'd agree with the dark rollercoaster description. I have found this site really helpful and the local meetings really friendly and encouraging - I believe one of the group lives on the island too? If you could make it, try to join us as I really believe it has helped me.

 

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Re: Support group for secondary BC hampshire/Winchester?

hi ladies. cant belive im doing this! i had breast cancer 17years ago, did chemo and radio plus Arimadex for 5yrs. On new years eve this year i was diagnosed with secondary breast cancer in AE, just about every where. since then things have been one dark roller coaster ,sickness, pain, no support and poor treatment . 

   Most of the time i have felt like i have moved to another planet, dont fit into any box and have lost any role i ever have had. Thank god for the tv, thats how i found this site. i dont have internet and was unaware you folks were there!!! i know,!!! but not everyone has or knows how to do this stuff, bare with me as im not sure what im doing. i would love to meet up with a support group.

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Re: Support group for secondary BC hampshire/Winchester?

Hi all

sorry not been on here for a while but this retirement lark is busy isn’t it 😂😉 Helen has been in touch and let me know about 28th and yes I can do that day, looking forward to seeing you all.

Great news your staying on your treatment Nicky. I have everything crossed for your CT results Helen. I’m more than happy to meet earlier Nicky as it must be a pain travelling back in rush hour(s). Spinnaker Tower is great for me, esp as I’m starting an art course Tuesday mornings (I’m rather rubbish at art but I’ve always fancied myself as an artist 😄). 

 

JudyW47: sorry you’ve had to join us, but as Nicky has said this is best place to be, everyone is in the same boat and really supportive. I live just outside Portsmouth too so if you ever want to chat I’m here, just message me. It’s a scary at first but these girls on here are great. Hopefully meet you on 28th.

 

love to all, keep well and warm

 

love

 

Julia Xx 

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Re: Support group for secondary BC hampshire/Winchester?

Thanks Pippy, but I'll be going straight from work so will be on my bike - now I know where to park.

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Re: Support group for secondary BC hampshire/Winchester?

Tuesday 28th at 1.30 or earlier is great for me! Anyone like to share lifts..Dragoncarine I could give you a lift if you like. X

 

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Re: Support group for secondary BC hampshire/Winchester?

Hi

Thanks for getting back to me/us Helen.  I did mean to add Julia on my last posting as well as you.  I'll have a look at what dates we've all come up with and then check back to see the days of the week that Julia cant make and see if between all of this we can come up with a suitable date.

Nicky xx

 

Edited:

I've had a quick look back and no-one has so far said the 28th/29th/30th isn't any good for them so I think it makes sense to fit in with Helen's dates if these are the only ones she can do.  I've checked back on what Julia has previously said about treatment days and it seems a Monday (every 3 weeks) is out.  As none of these dates is a Monday we can go for any of them.  All are good for me so shall we say Tues 28th?  If you can all say if this is OK we can confirm details and hopefully Julia will be along soon to say if its OK for her?  We can then move it out to the Weds or Thurs if needed, as long as we do it soon-ish as we all seem to be free at the moment.  xx

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Re: Support group for secondary BC hampshire/Winchester?

Hi everyone & welcome Judy.
I will reiterate what Nicky has said, meeting up in person is always lovely, you are amongst ladies who know exactly what you're going through. This forum is brilliant too.
I have quite a busy rest of Nov- can only do 28th, 29th and 30th, 1.30pm is fine for me Nicky but anytime is usually ok now retired! Had a CT today, results 22nd, fingers crossed the eribulin is working its magic - day 8 dose of cycle 13 yesterday so cannot taste a thing today, it'll be fine tomorrow though.
As I can only do those 3 days I quite understand if you decide another day fits better for everyone. Has anyone heard from Julia?
Hope treatment is going well for you all.
Love Helen x
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Re: Support group for secondary BC hampshire/Winchester?

Thank you Nicky I’m looking forward to it already x

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Re: Support group for secondary BC hampshire/Winchester?

Hi judy

Of course you are welcome to join us, it is a very frightening place to find yourself with mets and often you are the only one you know with them so it's also very lonely. Meeting up in person with other ladies in the same position can be very helpful and supportive - as is using this forum. I will wait to hear from Helen and see if she has any dates that are/are not suitable and then post the info on here. You may have read back on the thread but if you haven't we usually meet in the cafe at the bottom of the Spinnaker Tower in Gunwharf Quays at around 2.30. If possible I would like it to be earlier as the drive home for me is usually pretty bad as I get caught in all the traffic coming out of Portsmouth.

Watch this space!  Also, any other ladies with mets are more than welcome to join us, it's not restricted to Hants, it just that we used to meet regularly in Winchester which is fairly central in Hants so it made sense to put that in the original thread title.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi ladies, may I please join you at your November meeting. I’m newly diagnosed with liver mets and feeling a bit lost. I live just outside Portsmouth and would love to meet you all.

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Re: Support group for secondary BC hampshire/Winchester?

Hello, days best avoided for me are 15, 22 and not sure about 21 and 24 November. Other days should be fine. Thank you Nicky for organising . Be great to see you all again.

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Re: Support group for secondary BC hampshire/Winchester?

Only days I can't do in November are 20th and 23rd.

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Re: Support group for secondary BC hampshire/Winchester?

Hi

Having found out last week that I will be staying on the hormone treatment for a while (read:until progression!) it seems I won't be tied up with any particular treatment day so here's my availability for the next couple of weeks.  

Not free Tues 14th, Fri 17th Nov but generally free the other days.

If you can add any days you are/are not free I can work out a suggested date.  Also we will make the venue Portsmouth again as it's closer for everyone (except me!)

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi

It was lovely to meet up with you all - and glad you could make it pippy - it helps to know we are not alone and  meeting others in a similar position is good as we can all talk on the same level, so to speak.  It's good that the chat about PIP helped as well, fingers crossed you get awarded it as it does helpwith finances especially if you have had to stop working or reduce hours.  If you get PIP you can also claim ESA if you are on chemo or similar treatment that means you're not earning as much as before.

I will check dates and come up with some suggestions for mid-end Nov.  At the moment I'm not sure what my treatment days will be so things could change but everyone else can still meet up if I can't make it.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hello all it was great to meet you yesterday. I have applied for PIP today and my bcn is going to make sure I get it- thank you so much I am really chuffed. Re next meeting up Friday's are myy treatment day but that's 3 weeks out of 4, monday and Thursday are usually the best days for me but most days should be fine. Hope all goes well for you all in the next few weeks. Xx

 

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Re: Support group for secondary BC hampshire/Winchester?

Looking forward to meeting you all later! X

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Re: Support group for secondary BC hampshire/Winchester?

Hi Helen 

Thats great thank you, see you then. Looking forward to seeing you all again.

 

Love Julia X 

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Re: Support group for secondary BC hampshire/Winchester?

Hi Julia
I am catching the 11.59am train from Portsmouth Harbour on Wed which gets to Winchester 12.55. Meet you by the departures board by platform 4 & 5 at 11.50.
Love Helen x
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Re: Support group for secondary BC hampshire/Winchester?

Great that so many can make it.  Just check in on here that it's all going ahead next week but with quite a few of us able to get there I think there would be no need to cancel if someone can't make it.

1.30 at The Refectory in Winchester, 18th Oct

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Or Colebrook street is good - it's by the council offices (and it's where the motorcycle parking is so that's where I'm heading).