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Support group for secondary BC hampshire/Winchester?

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Re: Support group for secondary BC hampshire/Winchester?

Hi

It was lovely to meet up with Julia and Helen last Friday, sorry you couldn't make it dragoncarine. I think if you post a reply on the thread and tick the box that says 'email me when someone replies' you should get a notification that someone has added something, I've never used it myself so can't vouch for it but it may be a way of keeping track on any threads you post on. It's good that you're not having further treatment other than tablets, it's always a bit of a surprise when you don't have to have more intense treatment - but in a nice way!

Having said that all treatments have some sort of side effects so make sure you look after yourself.

I will post some other dates soon, for some time in July, but need to work out my own diary first!

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

sorry - only just seen this, but I wouldn't have been able to make it anyway as I'm still at work. One of the big shocks has been that I'm not getting any time off from this - when I first got the call from the doctor I was expecting surgery/chemo, started to tidy my desk, thinking months off work - but now I'm just having injections & tablets and no time off required. In a way that's good I suppose. Will try to get to other meetings - and try to find out how to get notifications so I don't miss messages.

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Re: Support group for secondary BC hampshire/Winchester?

Morning all

i don't think I can make 1.30 but I'll see you all at 2pm for cake. 😊 

 

Love Julia Xx

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Re: Support group for secondary BC hampshire/Winchester?

Confirming that I will be there for 1.30 today.

Love Helen x

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Re: Support group for secondary BC hampshire/Winchester?

Hi Julia, and anyone else also coming along, Helen and I are meeting at 1.30 for a sandwich as she is able to get there sooner than usual. We will still be there later, for a piece of cake 🍰, so don't feel you need to get there at the same time but if you can you are more than welcome.

Nicky x

ps I will check this thread later this morning, before I leave, to see if there's been any further messages.

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Re: Support group for secondary BC hampshire/Winchester?

Hi Nicky and helen

i have this week off work so I can make the earlier time on Friday. Look forward to seeing you all and hopefully meeting Dragoncarnie 

 

love 

Julia X 

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Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

Well, it seems 3 of us can make this Friday, 9th, so let's go for that shall we? The only thing is can we meet earlier than 2.30 as I always have a struggle through the rush hour traffic and on a Friday I think it will be even worse than normal?  Is 2pm OK, that way I can leave at 4ish and miss at least the Portsmouth part of the rush. Now that Helen isn't working hopefully she can get there for then and if Julia is working in the morning hopefully she can still get there soon after 2?

Helen - great that your daughter is back for 3 weeks, how lovely to spend time with her which you can now do without work getting in the way!

dragoncarine - we meet at the cafe at the bottom of Spinnaker Tower in Gunwharf Quays, Portsmouth. If you confirm in the morning that you can get there we will look out for you. Maybe say what coat/jacket/top you'll be wearing and any other things we can look out for. Check back on here in the morning also to make sure we are all still able to make it (unfortunately things such as appointments or last minute changes do happen). We look forward to meeting you.

If there are any other SBC ladies in the Portsmouth area who would like to join in then please do - you know where we will be!

Nicky x

ps I have had a message from Beanbob who won't be able to make it but will update when we meet up.

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Re: Support group for secondary BC hampshire/Winchester?

Hi everyone

 

I can make Fri 9 June afternoon - just let me know. Sorry I can't do next 3 weeks as I have my daughter back from Indonesia (she's working out there for a year & is back on holiday). So from 3 July onwards I can be available.

Julia - glad the wedding went well. I would definitely let your onc know about the leak.

 

Maybe see you on Friday then.

Love Helen x

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Re: Support group for secondary BC hampshire/Winchester?

Hi Nicky 

i can make Friday 9th June or the following Wednesday or Thursday. Wedding was fabulous and weather was great. Just back from Hospital after treatment this morning long delays and little screw cap thing on on my line came undone (un-noticed) so my drugs leaked, I was wearing jeans so it spread looking more than I think it was and I'm not sure if it was my H or the P, nurses just said they'd make a note but it's freaked me a little that I didn't get my full dose.  Debating whether I should let my onc know.

 

anyway hope all going well with you and that we can meet up.

 

love

julia Xx 

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Re: Support group for secondary BC hampshire/Winchester?

Hi dragoncarine. At the moment I'm waiting to see if any of the mentioned dates are OK for a few of us before we make a firm decision. Recently we have been meeting in Gunwharf Quays in Portsmouth as its closest to a few of the ladies, although a bit of a trek for me! We have previously met in Winchester as well as other locations in Hampshire but it depends on his many of us can get to a particular location and which date/s fut in with either work or treatments or other commitments. It tends not to be a set day of the month, just what suits the majority of us. So, once there's some more replies on this thread hopefully a meet up date will be confirmed. Just keep an eye on it.

Btw sorry to hear about the secondaries diagnosis, it's always a shock when it comes back especially after several years like you had. I hope you get a treatment plan sorted soon, most of us have felt better able to cope once we know what's going on. Check out the Bone Mets thread as well, lots of lovely ladies on there can offer advice and support and answer any questions you might have,

Hope to meet you as soon as we can get a date sorted.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

new here and just starting out on my journey with secondary cancer - lots of confusing emotions, please could someone let me know when the next local meet is? I would like to try to join you if possible.

My history is: Breast Cancer diagnosed in 2005, partial mastectomy wirh reconstruction, chemotherapy & radiotherapy. All over in 2006. No more worries. Had a cyst removed last month (for purely cosmetic reasons) routine tests showed up cancer cells, further scans proved that all my aches & pains I'd been putting down to old age were actually tumours in my bones. Also have some in my lung and possibly liver I think. Going to ask for copy of report at next meeting as last one was a bit of a whirlwind tour of the hospital with them not giving me a chance to pause.

 

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Re: Support group for secondary BC hampshire/Winchester?

Hi Julia

Have a fantastic time at your sons wedding, how lovely to be in France. We're off for a few days, in between treatment cycles and looking forward to a break away from all the rubbish!

Looking at dates that I can make, but please add any that you all can do, in case they're  not ones I put down, I can make Friday 9th June then the following M, T, W and T (12-15th) - providing I have no delays with my treatment the week before. After the that I'm back on treatment so can't give definite dates at this stage.

Anyone who can make any of those dates, morning, lunch or afternoon, in Portsmouth please say, then we can try to get something sorted. I may not be on here until nearer the weekend or next week but if everyone can add when they can make it we can finalise details next week.

Have a good bank holiday (and wedding Julia!)

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi ladies
I'm so sorry I missed the post about meeting last Friday 19th but there has been family birthdays and such likes going on. I do work all day on a Friday, but I can always book a half day. Glad everyone is doing well, apart from the fractured hip Beanbob 😬. I'm off to France this week for my son's wedding, but I'll check back on here when I get back in case there are any more meet up dates.

Take care and hopefully see you soon

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

Hi Hants ladies

Just to let you know that I am not going to be able to make it this afternoon, all down to plumbers fitting a new bathroom and still needing to complete all the jobs, grrrr. I have let Helen know as she was the only one who had confirmed but if anyone else was going to be there at 2.30 unfortunately there won't be anyone else to meet with as Helen won't be there either.

I will add some dates later once I have had a chance to check the diary and work around my appointment dates, obviously others can post suitable dates as well and we can all try to work around them.

Beanbob, goodness, no wonder you were in pain! Hope it heals soon and you can be out and about walking. It must be very frustrating to say the least. Good to hear the first SIRT went well and fingers crossed for getting on with the second one soon.

Take care all, hope to see everyone in the near future.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi lovelies

just checking in. I won't see you this month.

To add to my current challenges I now have to have my left leg pinned since I have fractured the hip. Months of pain now explained,  Surgery is on Tuesday. 

My good news is that the first liver radiotherapy was a success. The leg op will delay the second liver radiotherapy by 2 or 3 weeks only. 

By summer I will have been remade! Hopefully healthier and happier (actually I am quite cheerful, despite all). 

Love to you all

beanbob xxx

 

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Re: Support group for secondary BC hampshire/Winchester?

Hello lovely ladies

Hope to see you on Fri 19th 2.30pm. If you can't make it I hope you're ok and coping with your treatment at this current time.

Have a lovely weekend everyone.

Love Helen x

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Re: Support group for secondary BC hampshire/Winchester?

Hi Jools, are you able to make next Friday, 19th, in the afternoon? I can't remember if you work all day or not. 

For anyone else in the Hants area with SBC,  Helen and I will be meeting in the current 'usual' place at 2.30 on 19th. Please post on here if you want all the details and anyone with SBC is welcome to join in. We normally update this thread nearer the time to make sure whoever has said they can make it is able to - we all know how sudden appointments etc manage to interfere with our social life! Make sure you check it before heading off to Portsmoth on the day.

Hope to see a few familiar, and new faces on the day.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi Nicky
I can't do 15th treatment day for me and I normally work on a Monday and Tuesday and Friday. I can do Thursdays but not the 26th May as we are off to France for my son's wedding. But if the rest of you girls can make those dates I don't mind - I'll just come along when I can.
I hope all is going well for everyone.
Julia x

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Re: Support group for secondary BC hampshire/Winchester?

Well, it's ages since we have met up and changes with some treatments have meant it's been difficult to arrange. I am hoping I am now back onto a schedule that I can work with. I am not having treatment at The Marsden as I was unable to start one of their trials at this stage due to some blood results not fitting into the exacting criteria they set for the trials. I am back at my local hospital and now on eribulin, the same that Helen is on. My treatment day has also changed from a Friday to a Wednesday so that messes things up a bit as I think Helens is on a Thursday and I'm not sure what days other ladies are on. I have recently been in touch with Beanbob and she is also on another treatment but is having some short breaks away so probably won't be around until June.

Which days are best suited for you all? I can make a Monday and Friday as well as probably a Tuesday. I am not getting any noticeable side effects just after the treatment so probably a Thursday if that fits in with Helens week off the chemo.  All very complicated but let's see if we can get a date set up for later this month?

The best days at the moment forme would be Mon 15th, Fri 19th then Mon 22nd. We are hoping to get away that last week so whereas I would be free for all of it I can only make the Monday.

If you can say if you can make any of those dates just add a post, or suggest other dates as I don't have to be there, it tends to be whoever can make it. For convenience I think meeting in Gunwharf Quays still works for the majority?

Will wait to see who replies before setting any date.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

Unfortunately I can not make tomorrow either. I have been waiting to hear back from the Marsden about the next stages and I heard back at the end of last week, having been there on the Tuesday for various blood tests. I know from the time before when we last met up I was shattered after driving two long trips one day after another so I don't want to be too worn out for Wednesday when I have a full day of scans, tests, echo's etc.

Once I know whether I have been accepted for the trial I should know which days would be best for me and will post on here. If any of you ladies, who are closer to Portsmouth, want to arrange a time to meet then please go ahead. I will join in if I can but at the moment I need to sort out my next treatment step before arranging any other dates.

Hope everyone is doing OK and enjoying the sun, as and when we get it!

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi Nicky, Helen and beanbob

im so sorry you haven't got your SIRT yet Beanbob hopefully it'll be soon.  I hope everyone ok, I've had CT scan, all ok and bone scan as I was getting some pain in my leg on and off but that was thankfully clear and so the pain is just a side effect.  I can't make 4th April as I'm working but I hope Nicky and Helen can still meet up.  I'll keep an eye out for further meet ups. 

 

Sending you all love and the best of wishes

 

Julia xx 

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Re: Support group for secondary BC hampshire/Winchester?

Hi Beanbob, sorry to hear that SIRT didn't go ahead and the bloods weren't so good, I'm sure they will pick up soon. Hope the rads help, presumably with pain, and you don't get the spike in pain that they sometimes cause before settling everything down.

Hope everyone else is OK and we can check if any of us are free on 4th still. I should be but will know later this week I hope if my treatment remains the same or changes.

A busy week last week, birthdays and daughter's graduation from her culinary academy, so it was very pleasant not to have a single hospital visit for a change. Back to it all next week and the week after - as usual.

Take care all

Nicky x

 

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Re: Support group for secondary BC hampshire/Winchester?

Hi all

thinking of you lovelies this morning. Good luck with scans, treatment - Helen, Marsden - Nicky. 

i didn't get SIRT last week since my blood levels were awful on the day. But I am being assessed weekly so they can see if they stabilise and do it next month. I am on 2 weekly chemo and have also had radiotherapy to the top of my left leg which went into agony last week (causing part of the crisis in my view, I was on strong painkillers and immobile). Will be dog walking again next week. 

won't be around for 4th april,but I will watch for further dates. 

I am ok. Enjoying Spring, seeing friends, feeling calm and strong.

much

love

beanbob xx

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Re: Support group for secondary BC hampshire/Winchester?

Hi

I'm still on the trail of working out if Kadcyla is working out!  Yet another visit to The Marsden next week - they will be fed up with me soon - that's until I transfer there which I'm sure will happen at some point to get onto on of the trials.

That means I can't do next week but as far as I know Im free 4th April.

Hope everyone is coping with everything that is being thrown at you at the moment.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi everyone

I am free Tue 21, Wed 22 Mar, Tue 4 Apr - any good for anyone?

Hope you're all doing ok with treatments, scan results etc.

Sending big (((((((((cyber))))))))))))))) hugs

Helen x

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Re: Support group for secondary BC hampshire/Winchester?

Just sending positive thoughts to you Beanbob for today.
Hope everyone is doing ok.
Helen x
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Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

Sorry that you can't make it beanbob and Jools, I am still free if yiu wanted to catch up Helen?  Otherwise I will have a look at the dates already posted and see if they fit in with my appointments.  I'm due a CT next week so should know if the current treatment is working (or not!) and be able to have more idea about future dates.

Hope SIRT goes well beanbob and the procedure to have the beads inserted goes smoothly.

Helen, I hope you recover from day 8 of eribulin, I've seen that you have been feeling a bit low due to sad news but I hope you can pick up soon.  There is a lot of good support on the eribulin thread.

Jools, hope all goes well with your consultant appt.

Will be back in touch regarding some of the future dates and Helen let me know about next Thursday.

Nicky x

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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

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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

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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 

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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

 

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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

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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
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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

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Re: Support group for secondary BC hampshire/Winchester?

Hello lovely ladies,

 

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

 

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

 

Take care everyone, love Helen x

 

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Re: Support group for secondary BC hampshire/Winchester?

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

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Re: Support group for secondary BC hampshire/Winchester?

Morning all,

yes I thought we were talking March as well Nicky.

 

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

 

Helen and Beanbob hope you both ok.

 

Love to all

 

julia xx 

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Re: Support group for secondary BC hampshire/Winchester?

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

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

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

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

Hi Nicky and Maldives 

The 9th is good for me.

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

 

julia Xx 

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Re: Support group for secondary BC hampshire/Winchester?

Hi sue/maldives

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

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

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

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

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

Hi all,

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

 

Night night all x 

 

julia 

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Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

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

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

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

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

Nicky x

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

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Re: Support group for secondary BC hampshire/Winchester?

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

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

 

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

 

Love Beanbob xxx

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Re: Support group for secondary BC hampshire/Winchester?

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

Hi Nicky, Helen and Beanbob

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

 

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

 

Hope we can all meet up again soon

 

lots of love

 

Julia X 

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Re: Support group for secondary BC hampshire/Winchester?

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

Morning all

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

safe journeys everyone in the freezing fog.

love Juliaxxx