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Support group for secondary BC hampshire/Winchester?

helen44
Member

Re: Support group for secondary BC hampshire/Winchester?

AARRRGGHHH!!! Blame my chemo brain, sorry I need to change those free dates - I am free Tue 14, Mon 20, Tue 21 Mar, Tue 4 Apr.

Ignore the previous list!

Helen x

helen44
Member

Re: Support group for secondary BC hampshire/Winchester?

Hi lovely ladies

 

Shame about Thursday 9th March - it's my week off eribulin but no worries. Most Wed & Thursdays are not good for me due to onc appt plus chemo. Mon & Tuesdays are better if that ties in with anyone? I am free Mon 13, Tue 14, Tue 21, Mon 27 Mar - all from 2.30pm in Portsmouth.

Good luck with SIRT Beanbob, really hope it works for you. I am on Day 8 today, going up this afternoon. Haven't been too bad this first week, just waiting for the hair to go - can't be bothered with the cold cap! Wiggy will make another appearance!

 

Good luck to everyone with your treatments/scans/appointments.

Helen x

JoolsW
Member

Re: Support group for secondary BC hampshire/Winchester?

Hi all

just a quick post to say I am also now unable to meet up on the 9th  as I have a consultant appt, but it looks like no one else can either, so hopefully we can reschedule if that's the case.  Helen I hope your doing well on your new regime with not too many SEs. Beanbob SIRT sounds very interesting I hope it all goes well. 

 

Sending love and good wishes to you all and hope we can meet up again soon with everyone on top form.

 

julia xx 

beanbob
Member

Re: Support group for secondary BC hampshire/Winchester?

Hi lovely people

 

Just to confirm I definitely won't be able to come on 9th March.

 

That is set as the day of my final operation to put the radiotherapy beads in place. I am hoping to recover fast (ever the optimist) and then I only get 3 weekly chemos (upside compared to the weeklies I have been used to for the last year).  I can reassure you all I will be skipping to Portsmouth as soon as I am able to.  And Nicky, yes, somewhere between us would be welcome as well.  I am not however planning anything for the next few weeks till I am out the other side.  

 

Good luck Helen with first dose eribulin 

 

Love and best wishes to everyone

 

Beanbob x

 

nicky08
Community Champion

Re: Support group for secondary BC hampshire/Winchester?

Hi Beanbob.

Sorry to hear eribulin stopped working for you, bloomin' disease. Hope all goes well with SIRT. We will keep updating this and see who can make it on 9th. If you fancy catching up before then for a chat let me know and we could meet in the middle somewhere.

Nicky x

beanbob
Member

Re: Support group for secondary BC hampshire/Winchester?

Ps my last scans after 4 cycles weren't so bad. Bones were stable and there are only 2 of my multiple liver mets showing some progression. not good enough to continue eribulin but not so bad the team didn't come up with other options and strategies. I just keep looking on the bright side, tough though it is sometimes xxx
beanbob
Member

Re: Support group for secondary BC hampshire/Winchester?

Hi Helen, so glad the team at the Marsden were so reassuring for you. Great news. Good luck with eribulin. I am now off it. After a good hit for the first 2 cycles it stopped for me and it was no longer holding it. Shame because I found it really easy.  I didn't lose hair (had cold cap) and blood counts were good. 

 

My next treatment is SIRT. I am just waiting for the authorisations but if that happens I will be treated over the next 2 weeks (week 1 involves a day case angiogram and 'work up' and week 2 would be a chemo treatment for sensitisation and the insertion of radiotherapy beads into one half of the liver.). Inevitably that might also impact my availability on 9th March. I'll let you know when I get dates fixed.

 

love to all

beanbob xxx

helen44
Member

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

 

beanbob
Member

Re: Support group for secondary BC hampshire/Winchester?

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

JoolsW
Member

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 

nicky08
Community Champion

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

Maldives
Member

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
JoolsW
Member

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 

nicky08
Community Champion

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

Maldives
Member

Re: Support group for secondary BC hampshire/Winchester?

I could do 15th if thats the most popular.
9th looks promising too. X
Maldives
Member

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
JoolsW
Member

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 

nicky08
Community Champion

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!

beanbob
Member

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

Maldives
Member

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
JoolsW
Member

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 

helen44
Member

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
JoolsW
Member

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 

helen44
Member

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

Maldives
Member

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
nicky08
Community Champion

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

Maldives
Member

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
nicky08
Community Champion

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

beanbob
Member

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

MaraUk
Member

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
helen44
Member

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
JoolsW
Member

Re: Support group for secondary BC hampshire/Winchester?

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

JoolsW
Member

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

nicky08
Community Champion

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

helen44
Member

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

nicky08
Community Champion

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

JoolsW
Member

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 

beanbob
Member

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

 

nicky08
Community Champion

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

nicky08
Community Champion

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

beanbob
Member

Re: Support group for secondary BC hampshire/Winchester?

Actually now going to be down there for 2.30 after all.
beanbob
Member

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 

JoolsW
Member

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 

helen44
Member

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
beanbob
Member

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

JoolsW
Member

Re: Support group for secondary BC hampshire/Winchester?

Hi Nicky and Helen 

5th dec at 2.30 is good for me. 

 

Love julia x 

nicky08
Community Champion

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

Marye123
Member

Re: Support group for secondary BC hampshire/Winchester?

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

JoolsW
Member

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 

 

helen44
Member

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