Support group for secondary BC hampshire/Winchester?

[nicky08]

Hi a very quick update as I don't have regular wifi at the moment having moved house a week or so ago. This will explain my absence in general from the forum but I'm hoping we can still get another meeting organised in the Hants area.

we have sadly lost many of our lovely friends this past year or so, not forgetting Kirsti who passed away in May (apologies for not posting this information sooner but unfortunately I haven't had much access full stop to the internet). 

We would love to hear from any ladies recently diagnosed with secondary BC and who would like to meet up in a relaxed atmosphere to chat about anything at all either related to this horrible disease or not. I know there are a few of us who had manged to meet up who are still interested, Helen and Beanbob especially but it would be nice to meet some new faces as well.

 Please post on here if you are interested in meeting up and we can sort a place and time, that's for newbies as well as old hands 😊

Nicky x

[beanbob]

oh no. Very sorry but totally understand, Nicky. I am not tied to Fridays any longer so we can find a new date.

Was anyone else planning on going tomorrow ? If I don't hear I will probably not start the journey but would meet you all at our next date. If you shout, I will come!

Beanbob x

[nicky08]

Hi
So sorry but I'm going to have to cancel for Friday. We have our house on the market and we now have a viewing on Saturday which is going to need me doing a bit (extra) tidying and cleaning on Friday. Although an afternoon away from all of that would be lovely unfortunately it means I will be too distracted to enjoy it.
I can't make any other Friday for a few weeks however, treatments and appointments not getting in the way, I am usually available most other days of the week. Please let me know if there's another suitable date soon for everyone either in Winchester or elsewhere in Hants area. Hope someone else replies to meet up with Beanbob.
Nicky x

[nicky08]

Hi Beanbob. I'm free and would live to meet up in the cafe in Winchester next Friday. Hopefully some other ladies, new or 'old' will be able to join us.
I'll check on here before leaving home next Friday to make sure there are no changes.
Have a good weekend.
Nicky x
Ps Yes, it would be good to get a date set in July when we can meet up with Helen and any other ladies in the Hants area nearer the coast

[beanbob]

Helen, do you want to suggest a date time and place in July during school holidays - that would ensure you can be there.

Meanwhile, interim, does anyone want to meet me at the cafe at Winchester cathedral for 2pm Friday 12th June?

Beanbob x

[helen44]

Hi everyone,

I won't be able to make 12 June - it is the Isle of Wight Festival & transport is a nightmare that weekend!

It is more difficult for me to get further than Southampton or Portsmouth for a meet up as I need to tie up trains/ferries - the last trip to Alresford took me all day which is fine if it is in school holidays but I work until 1pm normally.

I would love to see you though so hopefully sometime soon.

Take care, love Helen x

[nicky08]

Hi ladies and thank you Beanbob for posting a date, I was going to get around to it but I'm glad you have put one on here.
I am free that Friday as it's not one of my treatment days so it would be lovely to meet up with new and old faces. I wonder if Winchester is a good place to meet as I know Kirsti hasn't been able to make any of the ones we last had over towards where Jacqui lived, but I think she can make Winchester - please correct me if I am wrong. I am happy to get there if it suits the majority but, again, it may be difficult for Helen. If we can get as many replies as possible we can decide who is able to come and where is the best place.
Hope all you ladies are doing well and it would be so nice to meet up again.
Nicky x

[beanbob]

Hello Maggot - welcome to our local group x

Hello Nicky, Kirsty and all

I could meet at 2pm on Friday 12 June.  I think Nicky has treatment though on Fridays?   

After that i have holiday so I am putting out a thought about Thursday 9th July instead? 

Beanbob 

x

[MaggotFM]

Hi All

Would like to meet up with you all when you have a convenient date in mind.
Helen advised me to come to this thread, I live near Southampton
Maggie

[Kirsti]

Hi Beanbob and Nicky, I can't make 15th as away on holiday so shall we try for a June date?

[nicky08]

Hi ladies
Unfortunately I can't make either 1st or 8th, a short break and treatment being the reasons. Although I can't make Friday 15th I can do any other day of that week so, if it fits in with you both we could make it another day? After that I can make early June depending on which week as my treatment day is always a Friday.
Nicky x

[Kirsti]

I can do the 1st of May but not the 8th xx

[beanbob]

Hi Kirstie and Nicky, Could either of you do 1 or 8 may instead? If not sometime in early June for me. I am happy to come to Winchester. Beanbob x

[Kirsti]

Hello everyone, I would like to meet up. I've been in a bit of a dark place for a while now and you girls may be just the tonic I need.

Love to everyone Kirstie xx

[nicky08]

Hi Beanbob, and lovely to hear from you, I hope you are doing OK?
I had also meant to have posted on here about a meetup time and date but what with Easter, a holiday and regular hospital treatments on a Friday I hadn't managed to plan anything too far ahead.
Unfortunately I am not free on 15th May but, as far as I know I am around on 22nd if that is good for anyone.
I had thought of Winchester as a meeting point as we have not been there for quite a while and there may be others who would like to join us, especially now that we are such a small group. I know this may be difficult for Helen(44) but we could go more central this time for anyone who has not been able to get to the more recent places we have met in.
It would be lovely to see anyone from our 'original' group but also any other ladies with secondary BC who would like to join in, just post on here so we can all see numbers and who is around.
Nicky x

[beanbob]

Hello everyone

Shall we meet up sometime soon to catch up with each other (hope you're all doing as well as can be) and share memories of the lovely friends who made this little group so active and special.

How about Friday 15th may? Happy to decide on venue when we know who can come and what works.

Beanbob xx

[nicky08]

Hi Helen, sorry I've not got back to you sooner but I also really enjoyed our little meet up last Monday. The weather driving home was horrible though, I hope your short crossing wasn't too bad either. I've got my fingers crossed for your scan results and hope that all is good, also that you get over the last lot of SEs from the Tax and steroids and don't need any further cycles. Do you then stay on Herceptin and hormone tablets? Do PM me or ask on here if you have any questions about continued SEs from the chemo etc.
I hope everyone else in our little group is doing OK and let me know who is up for a meet up in the next few weeks or who would like to join in.
Take care all
Nicky x

[helen44]

Hi Mara

I have PMd you - hope you are ok.

Hi All,

Nicky & I had a lovely morning last Monday in Portsmouth catching up - thank you for all the handy hints & tips Nicky, you have really helped me through the docetaxol.

Hope everyone's treatments are helping.

Love to all, Helen x

[nicky08]

Sorry that you can't make the 16th, Beanbob, and I hope you are keeping well.
As far as I know Helen and I will definitely be meeting on 16th in Portsmouth and anyone else is more than welcome to join us - just PM me for details.  If the weather is bad we will reschedule.
Hoping everyone is doing OK and if anyone else would like to join in please let us know, the more the merrier.
Nicky x

[beanbob]

So sad. I am so sorry for Jacqui and Michelle family. 

And, yes, our group is feeling small.  I would love to see you, but cannot make 16th Feb.  But count me in for next time. 

Beanbob x 

[helen44]

Another lady sadly gone, may you rest in peace Michelle and I am sorry that I never got to meet you.

You are in a better place now, love Helen xx

[belinda]

Hello Ladies, I hope you don't mind my intrusion here but seeing your new thread title I just wanted to say I'm so very sorry you have lost another of your friends. I am the last of my small local group and am one of now three ladies left from a much larger group who first met here and then met regularly in real life. I think of my late friends often, miss them terribly. We had so much fun, so many good times. I'm so glad I knew them, it was a privilege. I suppose I just wanted to say I am thinking of you all and I'm so sorry.
With Love, Belinda. X

[nicky08]

Hello Mara
I too had an email from Michele's son last night and was really shocked to hear that she had died. I was wondering when to post this when I saw that you had and I was too upset to add anything further last night. I had only spoken to Michele just over a week ago on the phone as she had sent me her phone number and although she sounded quite different from the Michele we knew and loved I didn't expect her to have gone downhill so quickly. This is such a difficult time for our now quite small group as we have lost Jacqui and Michele in such a short time. I hope anyone else who would still like to meet up, as suggested on 16th Feb, gets in touch so we can keep supporting each other as well as anyone else who would like to join us.
Take care everyone, thinking of you all.
Nicky x

[MaraUk]

Hi Everyone
I thought I had better pass on the sad news that yet another member of our group has sadly passed on. Michelle's family contacted me by email. I wasn't sure who else would know. So it falls to me to pass on this very sad news. I have all the information goes Michelle's funeral. Take care Mara. X

[nicky08]

Hi everyone

I am happy to go down to Portsmouth to meet with Helen and can make the 16th Feb.  Is anyone else able to make it then?  I can give a lift to anyone south of me eg Winchester if it's difficult to get there.  Just post on here or PM me and we will see what we can arrange.  If it's just me and Helen then I will leave it up to Helen to decide as it's a long way for her to make the trip.

Unfortunately I am not around to go to Jacqui's funeral tomorrow but will be thinking of her and all the family.  She had mentioned a few times about the plot she had picked out at the sustainability centre, from what she said it sounds a lovely final resting place.

Take care

Nicky x

[Kirsti]

Dear everyone

So so sad to hear that Jacqui has passed. May you rest in peace. Jacqui was a very special part of the group and her presence will be felt by everyone. I would like to meet up to celebrate Jacqui and others lives appointments and chemo allowing. I send my sincere condolences to all of Jacqui's family. Love Kirstie xxx

[helen44]

Hi Nicky,

So sad to hear about Jacqui - may she rest in peace now. It was lovely to meet her last August.

Thanks for your PM & sorry I haven't replied as yet. I am on cycle 4 docetaxol at the moment but would like to see you all sometime soon to celebrate Jacqui's life. I could do 12, 13 or 16 Feb if that's any good - would it be possible to meet in Portsmouth this time perhaps, say Gunwharf Quays? It is a bit of a difficult trek to Hedge End or Winchester for me from Island. I'll go with the majority decision though.

Hope your treatment is going well for you, and everyone else's.

Helen xx

[helen44]

Dear Jess & family,

I am really saddened to hear the news about your mum. I am fairly new to the support group and only managed to meet Jacqui once, back in August, when she was so welcoming at Tiffins and we enjoyed lots of cake & a chat. Her advice and support was invaluable and she will be sorely missed. May she rest in peace.

Thinking of you & your family,

Helen xx

[nicky08]

Dear Hants ladies
What a sad occasion to hear of Jacqui's passing. I know a lot of us are struggling with treatments and various side effects at the moment so I am wishing you all the very best. If any of you/us are feeling up to meeting up, and celebrating Jacqui and other Hants ladies no longer with us, in the next week or so can you either PM me or add a post on here? That way I hope to keep up the great job Jacqui did in organising us all and continuing our get togethers. If there are any other secondary BC ladies out there who would also like to join in but haven't in the past you are always welcome and details will be posted on here as and when something is organised.
Nicky x

[nicky08]

Dear Jess I'm so sorry to hear of your Mum, Jacqui, passing away. She was a lovely lady and she and I met up on a number of occasions when we hadn't got a planned 'Hants' meetup. It was a shame we couldn't get a date organised before Christmas so the last time I saw her was in Alresford in October/November with some of the other ladies. I know her treatment had caused many side effects but I will always remember her as being really good company, a real treasure. I send my condolences to you and all the family and if I can make it to Jacqui's funeral (various appointments allowing) I will send you a PM to get the details.
Take care
Nicky x

[MaraUk]

Hello Jess
I am so sorry to hear about your Mum. The wonderful meeting group she started enabled me to meet her and so many other wonderful ladies which helped me in so many ways. I will never forget those long tea parties in Alresford were we discussed everything through laughter and sometimes tears while eating our way through lovely chocolate cakes. Mara x

[Lucy_BCC]

Dear Jess
I am very sorry to read about your Mum, she has been a valued member of these forums for a long time and will be sadly missed. Please accept sincere condolences form all of us here at BCC

Take care
Lucy

[swanie]

Hi, my name is Jess, I'm Jacqui's daughter. I'm sad to say that my mum passed away yesterday at the Countess Mountbatton Hospice. It was a gradual decline and she seemed happy and comfortable up to the end.

I know that she found your support invaluable throughout her illness and she often told me how much she enjoyed meeting with you for coffee, cake and a moan. I would like to thank you all on her behalf for your support.

Her funeral will be held at the Hampshire Sustainability Centre on Wednesday 28 January at 11:30. You are of course more then welcome.

I'll keep an eye on this account so if you would like more details then feel free to PM.

Yours,

Jess

[nicky08]

Hi beanbob, fingers crossed for your results.  The aches and pains could be down to the horrmone treatment you are on?  I know some ladies suffer more than others.  I'm also due to get scan results next week so my fingers are crossed for me as well 

I will put a date up for end Jan/beg Feb after next week.  There is a chance I may have 2 additional cycles of the chemo and have realised how difficult it is to organise anything in advance since starting it in August so bear with me.  Hopefully though it has done a good job and I can then concentrate on getting some normality back without having to fit around chemo/steroid cycles.

Hope you are all coping with treatments Jacqui, Kirsti, Helen? As well as Mara and of course Michele, sorry if I've missed any one out.

Take care

Nicky x

ps Have enventually got round to sending you a PM Michele, sorry it's taken so long I've just had a busy week full of different hospital appointments etc.

[beanbob]

Michele, it sounds like you are being taken care of but I am so sorry to hear your troubles. You still sound like bright and breezy you. Stay brave lovely lady, Beanbob x

And Happy New Year to everyone in our special group - hope to see you in feb?. I have more aches and pains than before but get scan results next week so all I can do is cross fingers for now.

[nicky08]

Hi Michele

So sorry to hear you've had a rough time.  I will PM you later today or tomorrow once I have a bit more time as I'm rushing out for an appointment right now.  Take care though.

Hoping all the other Hants ladies are coping with treatments and whatever life is throwing at you. A Happy New Year to you all and I will see if we can get a date together for a meet up soon.

Nicky x

[Michele1957]

A Happy New Year to all you girls . Greetings from Southsea.
Well what a festive season I have had, I have seen more medical staff than family. But being with the family was the best.
I caught a chest infection just before Christmas but stayed at home with antibiotics. Fortunately no hospital admittance.
It does appear that I am very ill or very well . There is no appearance of grey areas !!!!!!!!!
So we have cleared the diary until 12.01.15 to get better which is working, someone one with me at all times . I am now with palliative care and it is months. Steroids at 6mg per day reducing on a weekly basis. I am like a guinea pig who dribbles a lot.
The best news so far is my eldest from the U.S. is coming home to see me whilst I am Compas Mentus...... Cannot wait for that, very exciting.
Tomorrow the hospital bed is arriving so the world and his wife is here. My palliative care nurse, my Occ Health advisor but if it needs doing it must be done. If it helps me sleep better the answer is resolved.
I hope you are all well my angels, even though life has slipped a little for me which was totally unexpected. Please say a little prayer to him up there and maybe light a candle for me I need all the help i can get. If there is any good news I will post here. Please feel free to,PM me if you need further updates. Fortunately God gave me a mouthpiece which I love to use but late afterernoon the voice fades quickly so 11.00am onwards is a good time to phone, contact me personally for the number.
Good to eventually get online and post.
Take care and massive of love from beautiful sunny Soutsea.
Much love to you all.
Michele xxxxxx

[nicky08]

Hello all Hants Ladies
Hoping you all have a lovely Christmas with all your loved ones.
Hopefully we can all meet up soon in the New Year and I hope everyone is coping well with whatever treatment you are on.
Nicky x

[Kirsti]

Hi everyone

Reading your posts we really are all going through the mill. I was due my 3rd paclitaxel Wednesday but when I got to hospital they would not administer it and admitted me straight away for antibiotic IV, apparently I have an infection but I thought the bleeding nose and sore mouth were just side effects of the chemo. Today my hair began falling out. I have been cold capping but I guess it is not going to work for me. I've been very low but need to shake myself and get back on the train. I really hope we can all get a little better and meet early in the new year. Love to you all. Kirstie xxx

[nicky08]

Michele, that sounds awful - for both you and your daughter, no wonder you've been very quiet on here. I do hope that the infection has cleared up and not done any longer term damage plus you get back onto Cape as soon as you are ready. You make sure you take care of yourself.
As to meeting up this side of Christmas it does look very unlikely. I'm still not over my laryngitis although it seems, I hope, to be getting better. I don't think I will make the trek down to Winchester this Friday for anyone that was still thinking of going for lunch or otherwise. After that I'm on chemo the following Friday, which takes me a few days into the following week to get over the steroid blast which means I won't be around much.
If we are to sort an early January meet up maybe we should make it at Hedge End (M andS) as we've done before? That way it will be easier for Helen to make it all the way over from IoW and for the more southerly ladies not to travel so far?
If we don't meet before then I wish you all a Happy Christmas and hope everyone is coping OK with current treatments and side effects, or as much as you can.
Nicky x

[Michele1957]

Hi everyone. Sorry to have not been in touch but I went to aachen germany to visit the christmas market and on the first day was urgently admitted to hospital with a bad infection on my leg. Ended up in IT for 5⃣days and am now back on the UK. Oncology sre checking me over,off all chemo drugs and back with palliative care. A real scare for me and my daughter, but now on the mend I hope.with regard to meet up I think January is going to be a better time for us all so I will look at dates for then. I gues a meet up is practically out of the question unless we meet for afternoon lunch/tea sometime in Alresford before Christmas day, let me know what you think. We all seem to be going through the mill at present, please God we all get better soon. Hopefully my oncologist has some positive news on Monday. Take care, much love and prayers from Southsea. Xx michele

[nicky08]

Oh Helen that is so sad 😞 What a dreadful shock it must have been for all of your family and I hope you get the support you need if you are feeling low. Hoping that the chemo is treating you as kindly as it can. I must admit, after the first dose I have coped pretty well, or certainly better than I thought I would, that's until I got this bloomin' awful cold that's going around. Take care of yourself and you can always PM me about the chemo and any possible dates that are good for you in January.
Nicky x

[helen44]

Hi,
I hope that are all doing well with treatments. I am now on week 2 of 2nd docetaxol and, touch wood, seem to be going along alright. It's everything else around me which is awful-my lovely cousin passed away yesterday during heart surgery, 54. What makes it so hard is that she lost her 14 year old son 7 years ago to sudden cardiac death. She was so supportive of me through my treatment and I am so sad.

I don't think I can make a Dec meet up but will try for January's.
Take care, love Helen x

[nicky08]

Hi Mara, sorry the dates aren't good for you (I hope that's the only reason?) but I know how busy everyone can be during December.

I've realised I put 19th on one of my replies when Michele had actually put 17th.  Either way I can't make either of those dates now -19th because of denosumab injection and 17th because I'll still be spaced out on my steroid come-down.

That leaves me only with this Friday's date that was suggested by Michele and I may be a possible 'no' for that as I'm still suffering with a bad cold/laryngitis that's been dragging on for a couple of weeks - just what I didn't need whilst going through chemo.

I'm not sure if Michele has booked anything but if we haven't heard maybe we will have to leave it until after Christmas?

Nicky x

[MaraUk]

Hi again unfortunately I will not be able to make the Christmas lunch. Hope everybody is well and coping with treatments.

[MaraUk]

Sorry Nicky can't do the 5th but can do the 19 hope everything is going ok

[nicky08]

Sorry I've not got back sooner but currently no wifi so using phone. Can do 5th and 19th but may not be able to taste anything on 19th after chemo the week before.
Sorry you cant join us beannob, you will be missed but we know December was busy for you. Will get a date organised for Jan.

[beanbob]

Hi girls
I think of you a lot. I hope you are coping with your treatments. December is not possible for me so I will see you in January. Sad to miss out on a 'special' but have fun
Beanbob x

[swanie]

I'm happy with any of thse dates except 15/12.  30th wedding anni.

thanks for sorting this out. You're a star.

hope to see as many as possible.  Love Jxxx

[MaraUk]

Hi Michelle and Nicky the Christmas lunch sounds like a great idea. Not sure of dates yet but I should be ok as long as it doesn't clash with my grandsons Christmas play. Thanks Michelle for organising it. Hope everyone is well especially you ladies on treatment Mara x