I'll be there too, thank you for making it Portsmouth, sorry for being a pain. Hope you had a great trip Helen.
see you all on 31st.
I was going to add a post to say it looks like 31st is a date we can all do but where to meet? However having now got Julia's update it sounds like Portsmouth would still be the right place this time as we can all get there. Shall we say 2-2.30 in the cafe at the bottom of the Spinnaker Tower as before? Everyone needs to check this thread that morning to make sure the meet up is still going ahead.
Julia, great news you've decided to take early (very, you spring chicken!) retirement at a time that is right for you. I think it's always up to the individual what they should do, sometimes work is a good distraction, sometimes it gets in the way of making the most of things.
If anyone else with SBC would like to join us the details are above. All of us who have met before and therefore recognise each other will look out for the newbies.
Hi Nicky and Helen, dragoncarnie and pippy
how fantastic Helen to be going to the Tour de France, hope you have an amazing time and the weather is better than forecast here. I can meet up on 31st July as I'm only working in the morning that day, the 7th August is a treatment day for me so I can't do that one, then I am away until until mid August. After that guess what Helen and Nicky...... yep I've gone for ill health retirement! I'm leaving to enjoy myself and do more "stuff", I just felt the time was now right, so my last day is end of August.
If we do meet up on 31st July I would only really be able to make Portsmouth that day as I'm working till lunch time and would need to go home and sort out dogs before coming, so timewise I couldn't make Winchester or Southampton this time, but if everyone else wants a change of scenery or it's better for newcomers I don't mind.
Good luck Helen with scan results. I hope everyones treatment is going smoothly.
Beanbob I hope you are doing ok, and we can meet up again soon.
Hello. I can do 31st July or 18th August but will be in France 1st to 17th August visiting family.
Location not that much of a problem for me as I can get most places fairly quickly & easily
It sounds like there are even more ladies in the southernmost parts of Hampshire! I seem to be the only one at the northernmost part.
When the (small) group met last time we did discuss meeting in Winchester to accomodate anyone who would find it easier to get there rather than Portsmouth where we have recently been meeting. As I appear to be the only current SBC lady travelling some distance I am happy to meet in either place but not more than once a month due to current treatment appointments and the distance. If any of you want to arrange other meetings, possibly in Southampton please go ahead, if I can make any of them I will do, as might other ladies with SBC.
So, in answer to dragoncarinne's question we don't always meet on a Friday, we have done in the past as it fitted around those ladies still working and/or on treatment but it can be any day of the week. Anyone who can make it usually adds to this thread or suggests which days suit them best. Currently I have my treatment on a Wednesday, 2 weeks out of every 3, so that day is out for me. Sometimes I'm also a bit tired on the Thursday of these weeks so that's proably not the best day for me either if I'm driving to Portsmouth.
Suggested dates for the next meet up:
Mon 31st July, Mon 7th Aug, any day w/c 14th Aug. Venue to be decided depending on the majority decision.
These are only the dates that I can do, others might suggest more/different dates and anyone can meet with anyone else at any time if they want to. This is only organised amongst ourselves and nothing to do with BCC. Sometimes we have to cancel at the last minute, especially those of us on chemo, so even if a time and place has been agreed on you should check on here nearer the time to make sure it's still going ahead.
Let's see if any of these dates comes up as a good one for most if us and please add to this thread so we all know.
First thing I had was bone scan - it was really cool to have a print out of my skeleton! What was nice was seeing that all the pains I've been complaining about showed up as black spots on the scan. Had to have injection of radioactive stuff then come back 2 hours later (not a problem for me as I live so close to hospital). I had an extra scan of my skull (got a spot there) and some close ups of my ribs as there's been quite a lot of pain there. was similar experience to CT scan (which I had the following day).
Hi, that sounds good that we are nearby, I'm not sure how you do private mail on here. I have got my second Taxol today, last weeks was OK but the dose is going up this time so I hope I will feel OK. Mine is lungs and liver and probably bone too, got to have a bone scan soon, have you had one of those?
I live in Southampton too, only recently diagnosed - I've just had 2 weeks off work but going back on Monday morning (afternoon off for CT scan) - I'm generally around if you want to meet up though.
Hi I live in Southampton area, would love to chat with others with secondaries. I have just started weekly chemo on a friday, do you meet up any other day? Thank you x
Yes, it suddenly does hit you so it's a good move to take some time off and step back from other responsibilities. Although I don't work now I did when first diagnosed with secondaries and many ladies do work, it's just getting the right balance for you. Just to let you know you are covered by the disabilities Act so your place of work does have to make concessions. You may want to check this out for yourself as I don't know any more than that.
I have been away for a week and now back into my treatment cycle so I will post in a few days time with some possible dates. This will be the ones I suggest but anyone else is welcome to suggest other times/dates/places. I think the last time we met we had discussed Winchester as the next place, we used to meet there a few years back when more ladies were still with us but have recently moved the meeting place to Portsmouth as that has suited the few that have been meeting up more recently. I am definitely not around this week, need to catch up on things, but hopefully we can get another date arranged when you are still off work for us all to meet up.
So it's all finally sinking in and I'm taking a couple of weeks off work to get my head round what's happening. So if anyone is free, would be good to meet up
really lovely to see you Nicky and Helen. Helen I hope you've had a lovely time with your daughter. Hopefully next time we will meet you Dragoncarine, I am still working but if I see the posts in time I take the day off 😃. I see Kadcyla is back available on the NHS, good news.
Hope you are all keeping cool in this heat. Look forward to our next meet up.
Love to all
I will try that. Had a lovely day off today as I had to go to hospital for an injection and booked the whole day off - I think I will continue to have odd days off like (especially if weather is nice!) - so at least I can get some benefit from all this. Hopefully I can make next meeting.
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!
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.
i don't think I can make 1.30 but I'll see you all at 2pm for cake. 😊
Love Julia Xx
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.
ps I will check this thread later this morning, before I leave, to see if there's been any further messages.
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
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!
ps I have had a message from Beanbob who won't be able to make it but will update when we meet up.
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
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.
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.
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.
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!)
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.
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
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
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.
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.
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.
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!
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
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
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.
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.
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
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.
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!
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.
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.
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
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.
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