Support group for secondary BC hampshire/Winchester?

[StickiVicki]

Sorry you can't make it Helen; and sorry I am so rubbish at remembering names!

Vicki xxx

[helen44]

Hi everyone,
Thank you so much for thinking of me coming from the Isle of Wight but unfortunately it is difficult to get time off work to come over this week. I am disappointed as I would like to meet you all. Also feeling pretty tired at the moment. However, I will keep looking on the forum & hopefully be able to make it another time.
Hope you are all doing ok with your treatments.
Love Helen (from the Island) xx

[Kirsti]

I'm looking forward to seeing everyone on Friday xxx

[nicky08]

Looking forward to seeing as many of you as can make it.  Hope everyone is doing OK treatment wise and it will be nice to have a catch up.

Jacqui, hope you can make it and it was good to hear your update, I was thinking of you over the last few days and hoping that the pleurodesis (sp?) went well and that you are recovering.

Nicky x

[StickiVicki]

Looking forward to it ... does the lady (Anne?) from the Island need a lift from Southampton ferry?

Vicki xxx

[swanie]

Hi Folks

Just thought I would Put the address up for this weeks get together to save you trawling back through the posts.  So it is 14.30 at Haskins Nursery, Mansbridge Road,West End. SO18 3HW.

I expect to be there on Friday - still rather fragile from the pleurodesis however I am on the mend.  Saw the Macmillan team today - what a revelation having someone take my day to day issues seriously so all going well with the recent plumbing job and good palliative care I will be raring to go for my date with Carlos in June.

Really looking forward to catching up

Love Jacquix

[beanbob]

Hi
Carlos certainly has it, doesn't he?!
I shan't see you in February, since my days off work are at the beginning of the week. Next month I hope , though I am planning some holiday.
Jacqui, hope they help you get more comfortable,
cheers all xx

[StickiVicki]

Thought it might please you.  I just love the music as well, it fits the story so well.  There are other versions by the Paris Opera Ballet, or the La Scala Opera Ballet if you are interested ... see you all in a couple of weeksish.

Vicki xxx

[nicky08]

Is it really his energy and joy that is the thing you like Jacqui? Come on, you are amongst friends so we know there's more to it than that 😉 (sorry, can't to proper smiley faces as I'm not using my PC) nice for something to look forward to and hope, from seeing you thread in the Treatments section, that everything goes well with your procedure to help with your breathing.
Looking forward to seeing everyone on 28th.
Nicky x

[swanie]

Whoaaa thanks for that Vicki.  I will take sneaky peaks to keep me going until the actual event.  I am seeing the ballet staged in the round at the Albert Hall so the choreography will different.  The thing that I love about Accosta is the amount of energy and joy he has - it just raises his dancing to another level.

Hope you are keeping well - look forward to seeing you at the end of the month.

Jacquix

[StickiVicki]

Thought that Swanie might be interested in this ... http://www.youtube.com/watch?v=KUIhgDR4EfM

[StickiVicki]

I will be going via Southampton Red Funnel if necessary, or just via Southampton anyway if anyone wants a lift.

Great to meet you all including Beanbob and Sue who I was meeting for the first time ❤️

[swanie]

Hello Ladies - it was lovely to see so many faces old and new. It is a case of sorry that you qualify to join this group but great to see you back Beanbob and good to meet you Sue.  Pleased to see Liz after all the treatment you have had  you are a real stalward and kep us all buoyed up.

Kirsti pleased that you could not make it due to having to make yourself even mor beautiful togo on holiday - where are you off to?  Pics next session please.

Valia hope you are OK - you were missed

Next get together is planned for the 28/2/14 at Haskin Nursery (garden centre not babies!!!)

                                                                         Mansborough Road, West End SO18 3HW

They do have a website with a map if you google them.

Liz suggested this - we thought it would be nice to reduce Vicki's drive and make it easier for the lady from the IOW to join us.

I happy to pick people up from Winchester if that helps.

I know it is raining again but my chickens are going to bed a bit later so the days must slowly and surely be getting longer - roll on summer.

Take care of yourselves - Jacquixxx

[Kirsti]

Hi ladies, I am afraid I cannot meet with you all today. I am off on holiday in a couple of days and have appointments to keep (hair, nails etc) I will be thinking of you all today, including beautiful Anne.
I hope you are all well and managing with your treatments. Love to you all Kirstie xxx

[Kirsti]

Dear Danny
I echo everything that has already been written. Thank you for continuing to post and keep us ladies informed. I am very sad to hear that Anne has passed. Although we only met the once Anne's presence in our little group was wonderful. Anne struck me as a vibrant and wonderful lady and you will all be in my thoughts today. I will say a little prayer for Anne and will lift my cup of tea and cake high in celebration of knowing such a beautiful lady. I am sending my love as I write. Kirstie xxx

[swanie]

Thank you for posting Danny.  I can only echo what others have said. Anne was so bright elegant when we met, I wish we had managed to get that cream tea together at Bournemouth as we hoped.   I know she had a hard time with her treatment and a lot of travelling to and thro which must have made engaging in anything else so difficult. the efforts you put into keeping us up to date were much appreciate - I am so sorry that you have had to post this final update.  

We will definitely raise a coffee cup and cake fork to her on Friday and send our thoughts out to you and yours.

With love Jacqui

[NannieSpiky]

Thank you Danny for letting us know about Anne. I will remember her as a lovely , elegant lady sitting next to me in M&S talking about life in general. It was such a shame that she never made another meet up but we would often wonder how she was getting on and it was lovely when you posted on the forum keeping us informed.
Yet again, another gem taken too soon. She will be in our thoughts on Friday.
Liz x

[StickiVicki]

I didn't know Anne, but I am sorry to hear the news that she has died.  Although she now has peace it will be a difficult for those left without her physical presence.  Even a death which is 'expected' can still be quite a shock as you get used to taking one day at a time only for the time to disappear from your grasp.

I am still on for Friday, and as has already been said we will have a cup of tea and a cake to her new found 'freedom'.

Vicki xxx

[nicky08]

Oh Danny that is so sad for you and all of your family. It was a delight to meet both Anne, and briefly you, last year and, as we all know, treatments so frequently get in the way of doing what we want. As you many have read we are a planning to meet up this Friday and I am sure we will all raise a cuppa and piece of cake to Anne, and you. I am glad you let us know, and have kept us in touch with Anne's treatments over the past year and grateful that Anne's passing was pain free and peaceful.
Nicky x

[Lucy_BCC]

Dear Danny

Please may I pass on sincere condolences from the team here at Breast Cancer Care at this sad news to you and your family and friends

Take care
Lucy BCC

[Guest user]

Hello everyone, 

I'm sorry to use this forum to get in touch with you all.

I just wanted to let you all know that Anne sadly passed away on Sunday morning. Although she only met  you once she felt a sense of belonging to the group would have wanted to thank you all for the support and wishes that you gave her.

I know she discussed some of her fears with some of you, so I wanted to say that these didn't happen. She wasn't frightened, wasn't in pain and wasn't alone. 

She had been having periods of confusion for a few months linked to infections and was admitted to poole hospital last wednesday with a chest infection. We think she had a bleed on the brain on thursday morning. She woke again on friday and was chatting with us through saturday and even had tea and cake on saturday afternoon. She didn't know how ill she was at that time. Later that evening she fell into a deep sleep and on sunday morning her breathing changed and I kissed and cuddled her as she passed peacefully away.

I know that she would have spoken to you all a lot more but she didn't get on well with computers. And she would have come to more meet-ups if it hadn't been for the roller coaster of treatment that she was on.

I wish you all lots of love, and have an extra cup of tea and slice of cake for Anne at your next meet up.

Danny

xxxx

[StickiVicki]

Sorry you can't make it this time Helen.  I am sure the date of the next meeting with be posted in due course.

Vicki xxx

[helen44]

Hi everyone.
Sorry I haven't been back in touch since I asked about the next meet up. It's me who lives on Isle of Wight but sadly I can't make this Friday in Winchester. I am on the east of the Island so it is easier to come via Portsmouth or Southampton so maybe next time I could accept your kind offer of a lift Vicki? Please let me know when next meeting is. I hope you are all coping with your treatment.
Love Helen xx

[StickiVicki]

So glad that treatment is going well for you both at the moment.  Really looking forward to Friday and I have managed to keep it open by fending off all requests to do something else on that day.

If the lady from the Island wants a lift please let me know.  I am willing to go via Red Funnel in Southampton if that is more convenient for her than WightLink at Lymington.  If anyone is in the Lymington area I could also collect ...

Vicki xxx

[nicky08]

Hi. Liz, lovely to see you posting amidst all your treatment and great news that everything is looking good. Hope you are not getting too exhausted as it would be a shame if you weren't there next week. As you say its great to say things we want to without having to scoot around the issue!
Good news from you, Jacqui, with the fluid being drained, that must be making a big difference to breathlessness and sleeping, hope the pills are being kind to you as well.
Have a good weekend everyone, hoping to see lots of you next week.
Nicky x

[NannieSpiky]

Hi Jacqui and all

Didn't see the double rainbow but it must have been shining over me as I had good scan results yesterday. Liver and bones are clear and The nodes in my neck are holding. The only small blip is a node in the middle of my chest but, when I have finished my WBRT then I will have 5 radio sessions to zap it as onc wants to nip it in the bud before it causes problems. Onc was really happy and gave me the news with a lovely smile and said things are looking ok for now.
My WBRT is going ok - just two sessions left now and the fatigue is not too bad at present. Feel a bit like Hannibal with the mask but it's not too unpleasant.
Glad you have had the fluid drained now Jacqui - guess you'll be running round Winchester next Friday. Hope all other ladies are coping with their treatments and look forward to seeing you all on Friday as I do enjoy our meet ups with our free-for-all and no holds barred chats.
Take care.
Liz x

[swanie]

Hello All

Just to remind folk that the next meet-up is Winchester Discovery Centre 24/1/14 at 14.30.  Look forward to seeing faces old and new.

I expect to be full of verve and vigor having just had 1.2litres of fluid drawn off my left lung - definitely gaining a bit of breathing space there.

hope Kirsti and Beanbob are getting on OK with their new treatment.

Liz hope that the WHRT is bearable - thinking of you.

Hope everyone else are holding their own and remain stable.

Take care - did you see the beautiful double rainbow today.

Love Jacqui

[nicky08]

Hi beanbob, hope you can make it.  Have read elsewhere that your treatment has changed. Both Jacqui and I are on the same combination of bone strengtheners and chemo tablets so do ask any questions.  Otherwise hope you are doing OK.

Nicky x

[beanbob]

I am looking forward to seeing ladies I have met and new faces at the jan meeting. It's months since I have seen you all. Take care meanwhile xx

[nicky08]

Hi chipper, as Vicki has said, you are welcome to join us, as are any other secondary ladies based nearby. I have been on Capecitabine for about a year with a small dose reduction that I've managed to cope with. I know what you mean about the prickly hands! Something I hadn't had up until the last couple of cycles. I've tried all sorts of creams but one I bought last week, from that up market store £1-land, has really helped my hands. It's called Cuticura and really absorbs well, it certainly has made my hands less 'tight' if you understand what I mean!
Nicky x

[StickiVicki]

Hello Chipper, I am sure that you would be welcome to join us, if you can make it to Winchester on the 24th.  I attended the November get-together and really enjoyed it ... just being able to talk with others that you don't have explain things to is such a blessing.

I will be driving up to Winchester via Romsey, Hursley etc if anyone needs a lift ... or via the ferry terminal if anyone can make it from the Island to Lymington...

[chipper]

hello - I wondered whether I might join you on here- I am 4 years on from my primary diagnosis -2009- and was diagnosed with multiple lung mets in September 2012. I have been on Capecitabine since then and so far so good- the mets are reducing in size and the side effects are tolerable (actually I think I've just got used to them !) I sometimes feel a bit nauseous and have diarrhoea but the main pain is hands and feet which are incredibly prickly and uncomfortable all the time, despite my dose being reduced several times.  Over Christmas I was given a cycle off for good behaviour,though pricklyness hasn't gone away.

Other than that I feel well and have challenged myself to do the Swimathon in March (5k) which might be madness...acrually am more concerned about needing a wee during the swim than the distance.  

Am being treated at Basingstoke by the way.

[StickiVicki]

Sorry to have been silent for so long.  I lost my internet and telephone connection on Christmas Eve and it was finally mended only yesterday afternoon.  Now I am having to remember how to type!

I have put the meeting in my diary and I am hoping to be able to attend.  Will check in nearer the time to make sure that the venue hasn't changed.

Happy New Year to everyone, and I hope we all had a good Christmas. 

Vicki xxx

[nicky08]

Hi Sue

Welcome to our little group 

So sorry to hear that your BC has returned especially after such a long gap, however it is a cunning disease and has caught all of us secondaries ladies out!

Since Jacqui (swanie) started this post last year we have met up several times and I think all of us have found it really helpful to share experiences, support one another and also have a laugh particularly as we are all local to the Hants area rather than spread throughout the country. I'm sure we'd all be very happy to see you at our next meet up on 24th Jan and I have seen that the venue has been changed to Winchester so that should be easy for you to get to.  Some of us are a bit further along the secondaries path than you currently are but I hope that this will give you some inspiration to see that life does still go on even when you've had this diagnosis.

Looking forward to meeting you and do keep an eye on this post in case things change before the 24th.

Nicky x

[Jo_BCC]

Hi Sue,

Welcome to the Breast Cancer Care discussion forums, you've come to the right place for some good, honest support from the many informed users of this site.

While you are waiting for replies, I have put for you below links to some of BCC's publications you might find helpful. Also our helpline team are just a free phone call away, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2

http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-breast-cancer-bon...

http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-resource-pack-bcc...

You might also find our Secondary Live Chat service helpful which runs each Tuesday evening between 8.30 and 9.30 pm, here you can 'talk' with others who have a secondary diagnosis.  You will be made most welcome if you'd like to give live chat a try.  Here's the link for you to have a look at.

http://www.breastcancercare.org.uk/community/chat

Take care,

Jo, Moderator

[Sue55]

Hi ladies
I was wondering if I could meet up with you? Possibly on 24 January. I first had breast cancer 13 years ago
and hoped I was cured -but I was diagnosed with bone mets in August 2013. I live close to Winchester and would welcome the opportunity to meet others in a similar situation.
Best wishes Sue.

[swanie]

NOTE CHANGE OF VENUE TO WINCHESTER DISCOVERY CENTRE.

Had a message from Liz - she is very Happy to come to Winchester - Nick can enjoy the book shops.

hope this works for you all

See you on 24/1/14 for a late New Year coffee and cake session

Love Jacquix

[swanie]

HAPPY NEW YEAR!!!

Hope all of you had an enjoyable Christmas.  I know I did especially watching my grandaughter Olive learnng to use her new scooter.

Next get together - going for Friday 24 January 14.30 at M&S coffee shop Hedge End.  Hope as many as possible can make it.

Valia please let me know if you would like a lift.  It is easy for me to pick you up from Winch.  I promise I will fill up with petrol so I am not in a state of high tension all the way home this time.

thanks for all you good wishes Nicky - the Cap seems more tolerable this cycle so I remain optimistic.  My breathing is so much better I am convinced that it is doing good.  My scan did not throw up anything new which is nice.  Having an echocardiogram on the 9/1/14 then may have fluid drained from pericardial cavity and lungs.  I am assured this will make me feel like a new woman.  Here's to that.

Hope everone else is having positive result from their treatment.

Love Jacquix

[nicky08]

Happy New Year to you all and I hope everyone had a good Christmas with loved ones.

Thinking of you Liz, with all that the New Year is throwing at you straight away, hope all planning, treatments and side effects have minimal impact on your general well being but sorts those little uggers out once and for all.  

Good luck to everyone else with current treatments, hope they keep you well.

Nicky x

[nicky08]

Hi Jacqui

I hope you managed some sleep after your early morning (late night?) post? Also hoping everything went OK today and the results are good, although I think you said there were for benchmarking rather than seeing how the current treatment is working.  Sorry to hear you have been sick, not nice at all. I've definitely felt worse on cape than I do now, particularly early on, almost as your body adjusts to all those bloomin' tablet you have to take.  Hope you feel better soon and can enjoy the festive period with your family.

Hi Liz, sorry to hear about your run in with the anti biotics, I'm sure that's what you really didnt need on top of everything else. I don't know if you've seen the recent post by Jane about her health since having gamma ray for brain mets 2 years ago. If you have I'm sure it must give you great incourabement that rads to the brain do work and keep things at bay. Good luck for the New Year rads planning and then the sessions after.  Can we call you Gangsta Granny if you turn up in a bandana 

Wishing all the lovely ladies on this thread, and on the forum in general, a very Happy Christmas.  I hope you can enjoy yourselves, after a very tough year for us all, with your loved ones.

Take care and looking forward to meeting up in 2014 - don't mind where!

Nicky xx

[swanie]

Hi Liz and all

So sorry to hear about your chest infection.  Not what you want especially at this time of year.  Good you have your WBRT appointment but rubbish that you have to go through it.

Would it help to move the next meeting venue to Hedge End so that you do not have so far to travel?

Valia I would be happy to pick you up from Winchester.

Have my appointment and scan tomorrow so a bit restless tonight with scanxiety.  Was horribly sick last week so my jeans are a tad looser.  Could not take last 3 doses of Cap but don't supose that really makes a lot of difference.  Seem to remember folk saying the second cycle is often the worst so looking forward to better things next time round.

Take care have a good Christmas - thinking of you all

Jacqui

[NannieSpiky]

Hi ladies
Just wanted to echo the sentiments of everyone on here and say how much I enjoy our meet ups and even though we have come together in quite a tragic way, we all seem to deal with it in a very open and honest way within our group which seems to be so refreshing and therapeutic for all of us.
Unfortunately, after recovering well from my brain op, I got hit with a chest infection and ended up on antibiotics. I am slowly getting over it now but it has knocked me down a bit. I also go for my mask fitting on 2 Jan and my WBRT starts on 8 Jan for 10 sessions so I hope to make the Jan meeting albeit with a different hair attire either known as 'wiggy' or 'bandana' - we shall see on the day. I shall save a fortune on hair products!
Anyway, hope everyone else is coping with their ongoing treatments and that you all have a lovely Christmas and I sincerely hope that 2014 will be a kind year for all of you,my forum friends.
Take care
Liz x

[swanie]

Hi Kirsti

pleased to hear to got home safely.  Next time we meet it will past midwinter and the nights will get shorter so the the need for specs will become less urgent.  Oh yes after you went Valia mentioned that it is possible to get the calicium tablets as soluble effescent ones, maybe these will work for you.  If the hospital cannot perscribe them I am sure your GP would.

Take care if any other night owls are about hope sleep comes soon.

Sweet dreams Jacqui

[Kirsti]

Hi everyone

I would simply like to echo Jackies post, you are a lovley bunch of girls and I am so pleased to be part of our little group, we did have a giggle and I feel lucky to be able to talk so candidly about anything and everything.

Helen, it would be really nice to be able to meet you, I hope you can make the trip soon, we are a fun loving, friendly bunch.

You'll be pleased to hear I made it home safely, although by the time I got home my driving vision was very bad. Note to self - take glasses next time.

Merry christmas to everyone and I look forward to meeting again in the new year xxx

Love Kirstie xxx

[swanie]

Hello - after a lovely sunny day it is tipping down with rain again..

It was great to see so many, looking round the table I just keep thinking what an amazing bunch we all are.  I think everyone has had a few shocks and surprises handed out to them and somehow we all manage to find a laugh in it all somewhere.  I hope you are all recovering and improvong for Christmas.

Helen it would be lovely if you could join us - it is a hike for you so perhaps Vicki's offer will be of help.  We have been tending to meet in Winchester as this is fairly central however we sometimes drift down to Hedgw End and us the M&S coffe shop.  It is all very informal with no other focus than giving support and offer the benefit of past experience.  Somehow a lbit of gossip and a laugh come into it as well.

Vicki Hope your appointment went OK - if it was a medical type one and you ha no nasties in the pipework.

Thinking of Friday 24th January 2.30 for the next gathering - possibly with a return to the Discovery Centre.  

Have a lovely christmas everyone and see you after - love Jacquixxxx

[StickiVicki]

Helen, do you come over to Lymington?  I live in Lymo so I could pick you up from the ferry and we could go together.  Is there a rough date for the next meeting?

Merry Christmas everyone.

Vicki xxx

[helen44]

Hi ladies,

I live on the Isle of Wight & would be really interested in meeting up with you next time you all get together. I am a year on from double whammy diagnosis of bone mets. Perhaps someone could give me some details of the meet-ups please?

Many thanks, Helen x

[nicky08]

Hello ladies
It was lovely to see so many of us there on Friday, well done again for organising us, Jacqui 🙂 Sorry you couldn't be there Vikki, hopefully see you in January. It was great to see you, Liz, doing amazingly well after your recent op, look after yourself and also the rest of us currently changing or getting used to new treatments.
Nicky x

[swanie]

What a shame Vicky - Have a lovely Christmas and hope to catch up with you in theNew year.

Right had better hit the road!

love Jacqui

[StickiVicki]

Sorry ladies, I am not going to be able to make it today as 

I have an appointment today.  Hope you all have a great time and Merry Christmas.

Vicki x x x