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Support group for secondary BC hampshire/Winchester?

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Re: Support group for secondary BC hampshire/Winchester?

Hi I would hope to get there about 1:30 and I will be wearing my head scarf ! X

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Re: Support group for secondary BC hampshire/Winchester?

We mentioned last time that it might have been helpful to have some sort of sign so people can recognise us. I have a very small pin badge on my leather waistcoat but it's not very visible - maybe others have an idea? I've booked my time off, so will be leaving Romsey at 12:30ish - should get to Portsmouth by 1:30 if not earlier. I'm easy to recognise as I'm the one in the biker gear 🙂

 

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Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

It looks like Tuesday 6th is the best date for everyone. Unfortunately I now won’t be able to make it as OH and I have decided to take a short break before I get involved with treatment changes. We had already booked a one night stay in the UK on the Monday but have decided to cancel that and go away for a few more days in Europe. All of this has only come about over the weekend so I’ve not been holding back, I was just waiting for more confirmations about who could or could not make it before posting. I don’t see there’s any reason to change the meet up date so although I will miss seeing everyone I can catch up next time.

Moijan, sorry if you’re making a big effort to get there, I know it will be quite a long travel time, so I’m extra sorry I won’t be there. Hopefully one of the ladies who will be able to get there for 1.30 will be able to look out for you.

Enjoy the afternoon and hope the weather is kind to you all.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi Moijan

Would love to meet you in person!! Looks like everyone seems able to make Tue 6th Feb 1.30 in the cafe at the bottom of the Spinnaker Tower at Gunwharf Quays shopping centre on the waterfront in Portsmouth. Not sure where you are coming from but train to Portsmouth Harbour is a 5 minute walk from station to Gunwharf - well signposted. There is also a large multi storey car park at Gunwharf.
I can't get there until 2.30 as looking after grandson but am sure Nicky will let you know who to look out for. Last time there were 7 of us.

Good luck for your scan Julia - on a Sunday!
Love Helen xx
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Re: Support group for secondary BC hampshire/Winchester?

I can come Tuesday 6 at 2.30 x

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Re: Support group for secondary BC hampshire/Winchester?

Good luck for your scan Dragoncarine on 29th. I have my scan  this Sunday 28th!

 

best wishes

 

julia x 

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Re: Support group for secondary BC hampshire/Winchester?

Hi Nicky, and Helen, I’d love to come if I can, have always wanted to meet you all

 

let me know

 

Moijanx

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Re: Support group for secondary BC hampshire/Winchester?

Carine not Caring!! Predictive text at work again!
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Re: Support group for secondary BC hampshire/Winchester?

Good luck for your scan on 29th Caring, hope you don't have to wait long for the results x
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Re: Support group for secondary BC hampshire/Winchester?

Thank you - I'll make sure I've got everything well in advance and take tuesday afternoon off then. 🙂

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Re: Support group for secondary BC hampshire/Winchester?

Hi I can do the Tuesday xx

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Re: Support group for secondary BC hampshire/Winchester?

At the moment it looks like we’re leaning towards Tuesday. If anyone else who is interested in joining us would like to say which day is best I will confirm it early next week. Just thinking of Dragoncarrine who may have to take time off work to get there on Tuesday and giving her enough time to organise it.

Have a good weekend all if I’m not on here before then.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi everyone
Glad you've all enjoyed Iceland! Just returned from Paris myself!
Could make Tue 6th Feb but will be a bit later than 1.30 as I will be looking after my grandson in the morning. Can't do the Wednesday, sorry.
Hope you're all ok & treatment is going well.
Love Helen xx
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Re: Support group for secondary BC hampshire/Winchester?

Hi all

The Tuesday is the day I can do. Hope you loved Iceland Nicky. And hopefully will see you all soon.

 

Love to all

Julia X 

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Re: Support group for secondary BC hampshire/Winchester?

I can do either Tuesday or Wednesday (but prefer the Wednesday if choice is equal between the two).

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Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

Another one back from Iceland - and getting my head around these dates!

It seems that none of us can make one particular day in that week (w/b 5th Feb)

I now can't do the Monday or Thursday (and, as said, would rather not do the Friday).

It therefore looks like it is down to the Tuesday or the Wednesday.

If we can all say which day out of those two we can do (even if you have already said, just so it is a quick count rather than a checking back) and we will go with the majority as thats the only fair way to choose I think - and I'm not going to make the decision!! If there is no majority we'll go back to the drawing board or I'll take a blind guess between the two.

I can do both btw.

Nicky xx

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Re: Support group for secondary BC hampshire/Winchester?

Week beginning 5th good for me ladies too xx

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Re: Support group for secondary BC hampshire/Winchester?

Hi all

Hope you are all doing well. Dates I can do in Feb are; week beginning 5th Feb, but not the 7th.

Then I can do the from 13th until 22nd. 

Be lovely to see you all again.

take care

love

Julia X 

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Re: Support group for secondary BC hampshire/Winchester?

Helen

 

 

have sent you a pmxx

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Re: Support group for secondary BC hampshire/Winchester?

Nicky have sent you an urgent pm
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Re: Support group for secondary BC hampshire/Winchester?

 Hello I may break the mould and look for holidays in hot places ! Week beginning 5th of February is good for me, Monday and Tuesday are my best days. Be great to meet up again everyone. X

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Re: Support group for secondary BC hampshire/Winchester?

I can't do either 18th or 30th Jan - so week beginning 5th Feb would be better for me - Wednesday 7th would be ideal as I have day booked off work that day already. Iceland was fantastic - we'll have to compare photos!

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Re: Support group for secondary BC hampshire/Winchester?

What is it with Iceland and this group?  I'm off there with my daughter next week as she has some time off and has always wanted to go, as have I!

Going on the dates so far it looks like early Feb might be best as not everyone can make any particular week/date in January.

I'd prefer not to travel down to P'mouth on a Friday as the traffic is alway busy on the way home but so far can make all days in the week beginning 5th Feb.  Maybe we can come up with a date that week?  If not any of you can arrange to meet up in Portsmouth at another time, as you are all very local to there, but I probably won't be able to make it sooner than that week in Feb.  Feel free to sort out an earlier date if you'd like to get together sooner than Feb.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

 
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Re: Support group for secondary BC hampshire/Winchester?

Hi everyone,

happy New Year 

Got back from Iceland last night. Totally loved it. My sister had booked with an extreme off road company so we ended up scaling volcanos and going to the top of glaciers in superjeeps scaling the rest on foot. I am already planning my return this year with husband this time.  

 

Dates in jan I can do are  18th, or 23rd, 24th, 29th,  30th Jan. 

 

So pleased you are booked into Penny Brohn Carine and that you enjoyed it Judy. I’m back there in March.

Have a lovely time in Paris Helen, hopefully see you this month.

 

love to all, keep well. 

 

Julia Xx 

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Re: Support group for secondary BC hampshire/Winchester?

Happy New Year to everyone. I am in Paris 19th-24th so I can only really make Thu 18th and Tue 30th with my chemo days etc etc. If that fits with anyone else that's good but if not, no worries, I will see you at a later date.
Hope Iceland was amazing Julia and Carine. So pleased that many of you have taken the decision to attend Penny Brohn - it is very helpful.
Take care, love Helen x
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Re: Support group for secondary BC hampshire/Winchester?

Hi Ladies I’m at Penny Brohn it’s my last day today. It’s been great and will definitely come back for the follow up course. End of January will be good for me. Hope everyone is keeping well. I had a failed liver biopsy so just waiting for another one. PET scan showed no further mets than liver but still anxious to start some form of treatment x

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Re: Support group for secondary BC hampshire/Winchester?

I have CT scan on Monday 29th Jan, so would prefer not too near that date if possible - preferably the week before?

Just had a look on Penny Brohn site and booked myself on for Feb Half-Term (13th to 15th Feb) as you all made it sound worthwhile.

PS Enjoy Iceland Jools - we're just back and loved it, so glad I went.

 

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Re: Support group for secondary BC hampshire/Winchester?

Happy New Year to all Hants ladies - especially all of those who managed to meet up in November.

I've not put up any suggested dates yet as I think Helen is away at some point in Jan and I'm hoping to have a short break with my youngest daughter, also in Jan, so I haven't got a full list of who is availalbe and when.

If anyone wants to suggest a date based on what the replies so far have been please go ahead and as many ladies that can make it can meet up. Otherwise I will suggest a date later in the month when I think most of us should be back from any trips.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

 

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Re: Support group for secondary BC hampshire/Winchester?

Hi everyone,
Firstly I would like to wish you all the best for 2018 & hope that your treatments work for as long as possible. Today marks my 5 year cancerversary since the double whammy BC and bone mets. I added liver mets in 2014. Thank you for your support on the forum, It is a lifeline to me. A special mention to Nicky - you have been amazing, thank you.
Have a peaceful Christmas lovely ladies.
Helen x
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Re: Support group for secondary BC hampshire/Winchester?

Hi all

was lovely to see you all on Tuesday, and meet you Judy and Kizzy.  I’m so pleased Judy about you booking the PB course, it really is so worth it. 

The dates I can’t do in Jan are 2nd (treatment day) or the week beginning 7th January (off to Iceland ☃️❄️) or 22nd Jan (treatment day).  

 

Hope your MRI went ok Dragoncarine and Judy you get your treatment plan soon. 

 

Love to all

Julia X 

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Re: Support group for secondary BC hampshire/Winchester?

Was lovely to meet you all yesterday, what a lovely welcoming group of ladies you all are. I left feeling positive, enlightened and ready to do battle! My head is still spinning with all the treatments you’ve had. I’ve booked myself on the 2 day PB residential well being course so not available 2 to 4 of January (hope you get the same dates Kizzy) so I’m unavailable then. Merry Christmas and Happy New Year to you all and really looking forward to meeting up with you all again in the New Year x

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Re: Support group for secondary BC hampshire/Winchester?

Hi

I was lovely to meet up with everyone yesterday and to have kizzy and Judyw47 join us - even though, as with everyone, we'd rather not be meeting as a group of ladies with secondary BC as our common denominator!  Sorry I didn't see your message yesterday kizzy as I had left home much earlier, we'll have to try to sort out a way of being recognised for any one else in the future who joins us.  I guess it's quite good that we don't stand out amongst the crowd as all having SBC! But it makes it more difficult to identify with us. I do try to keep an eye out for anyone who comes in and appears to be looking around but it was very busy in the cafe yesterday so I missed seeing you and Judy before you had to come over and introduce yourselves.

Well, it was lovely sunny weather, what a treat and I hope everyone got back home OK. The drive home for me was not too busy but as I approached Winchester it looked like the end of the world was coming with a huge black rain cloud ahead!  Luckily I just managed to get past without the rain getting too bad and it was much brighter after that.

As we won't meet up before January now I'll wish you all an early Happy Christmas and will add some dates on here in the next few weeks.  If anyone has already got dates they definitely can't make can you add them now so we can all work around those?

Good luck with scans and 'procedures' etc that some of you are having.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi. It's Kizzy. How will I know who you guys are at the spinnaker?😊
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Re: Support group for secondary BC hampshire/Winchester?

planning on leaving Romsey at 12:30 - so should be there, taking the winter bike for a whoosh down the M27 🙂

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Re: Support group for secondary BC hampshire/Winchester?

Looking forward to meeting you all today. See you all at 1.30 pm x

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Re: Support group for secondary BC hampshire/Winchester?

Yes, looking forward to it as well. Weather is looking nice for a bright afternoon so it shoukd make everyones travel a bit better.

See everyone later, 1.30 at the Spinnaker Tower cafe (or later if you can't get there by then)

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi everyone
Looking forward to seeing you all tomorrow.
Helen x
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Re: Support group for secondary BC hampshire/Winchester?

Hi Nicky and Carine. If only it was that easy.After being diagnosed , having Radio and seeing the onc, who comes over from Southampton i was told that i had extensive bone mets, ok , bad enough!!,but as my onc. said on a positive note -You dont have it in your organs. This was after a year of fighting to get my doctor and hospital to listen. 3 stone lighter size 14 down to baggy size 6!!, continually throwing up ,coughing up white sticky glue stuff , being unable to eat much and 10 months later, a trip to AE revieled the diagnosis. After going on Letrozole i was told i would have a scan and another appt in 3 months this brings me to May,. at this point i was told i was -stable.                                        At the next appt in July I was told the recent scan showed i had it on my liver so i went on Exemestane/Aromasin. all this time i am on Morphine, antisickness ,in pain and spending a lot of time in bed. the onc was going to see if the liver surgeons could blast the cancer and did a liver scan that week, i was hoping to hear the following week only to find out my onc has gone on hols till Aug! this went on for 5weeks,phone calls, not getting anywhere with anyone, in the end my son took me to see a private liver surgeon who told me the scan showed the liver cancer was there at on the AE scan in January.                                                               now i have been put back on Letrozole, because i was stable when they swapped so they dont know which drug was working, now i have been waiting nearly 4 months to have the next scan and see the Onc .When the Onc agreed to get the 1st scan looked at again by someone who knows thier job they also found it on my lung. To be honest they dont care, i dont trust their treatment so will have to up my game and get informed.It has only been the last 3 weeks after a complete change of pain meds that i think i was allergic to that my pain has been controlled, ive stopped being sick and have regained some quality of life. Its taken 10 miserable months to get to this point, but on the brighter side im still here and getting a bit of fight back. my next scan is next week followed by Onc visit the week after 29th nov. chemo is on the cards so i would like to get it in my head what options i have and wether to go there. 

    The whole year previous to this i was and still do suffer PTSD and aniexety, only letting you know this so that if i can fight my demons to get over to meet up, you may well see a frightened rabbit type person hovering for a while.!!! xx

 

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Re: Support group for secondary BC hampshire/Winchester?

Hi Kizzy

It sounds like you are very hormone positive, which would have been the case with your primary and why you are now on hormone treatment (plus a bone strengthener, Denosumab).  This is pretty common treatment as it tends to be kinder in overall side effects, although there will always be some.  You should be scanned after a few months to check how it is working.  Although with any diagnosis of breast cancer we immediately expect to have chemotherapy this isnt always the case.  Often, especially with hormone positive secondary BC, they will save the 'big guns' for another time.

I understand you are not familiar with computers (you've done great so far by the way!) if you look into one of the other headings in the 'Living with secondary breast cancer' section either on the front page of the Breastcancer Care website under 'Forum' you can see other 'threads' (ie headings with information other ladies have written) which talk about treatments etc.  If youre unsure how to do this (I'm not sure how you have accessed this 'thread' - either directly or a general google search) we should be able to help you if you do get to our meet up.  You can discuss/ask questions in any of the threads relevant to you once you've found them and more ladies are there for support.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Sounds like you have a lot to deal with. I found too that the Breast Care nurses seemed to vanish after the initial meetings. I have bone mets on sternum, ribs, shoulder blade, upper arm, skull & lung mets and a small lump in the skin on my chest. Initially they thought liver too but now seem to have discounted that. I was surprised that there wasn't any intensive treatment offered. I'm on Tamoxifen & Goserelin, which as far as I understand are starving the cancer, hopefully back onto Denosumab soon (stopped for tooth treatment). I did have one shot of radiotherapy on my arm because it was getting difficult to dress & undress - but I had to ask several times. I'm quite lucky in that the oncologist I see (at the General in Southampton) explains things really clearly in a  way that I can understand.

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Re: Support group for secondary BC hampshire/Winchester?

  jools, Nicky and Carine, lovely to hear from you. I feel quite emotional knowing i can talk to those who understand. This is the second time ive written this, it all just disapeared a minute ago. sorry im computer illiterate dont have a clue if what im doing is right but i need to get support and info on treatments. i dont hear a thing from breast care nurses and have be handed to the palative care team at the hospice, which seems to be pain control, Denusomab jab and of you go.!!! i have thigh, hip, upper arm,rib,

spine, skull, liver, lung mets and a mass on my sturnum. Apart from radio in feb i have just been on Letrozol  and Denusomab. is this normal? or are pennies being saved? thanks for the invite to the group meeting and if my body lets me i will try to get there . Although i truly feel sad for you all, only those who have walked in your shoes can get it!! ThanksXX

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Re: Support group for secondary BC hampshire/Winchester?

Enjoy the course Julia, would love to hear about any tips or information that you think would help any of us. Maybe you can give a presentation on 28th 😉.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi Kizzy
Sorry you’ve found yourself on here, but stick with this forum it will help you. I hope you can make it to our meeting on 28th, I’m sure it will make you feel a heap loads better.

Nicky and Helen; I’m just leaving for a two day residential course at Penny Brohn, OH says I’m not allowed to take my sewing machine 😘.

See you all on 28th. Thank you for organising it Nicky X

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

Kizzy, sorry you have to join us in the secondaries group but you are more than welcome to come to our next meet up, as are any secondary ladies. We chat about all sorts of things as well as the impact this disease has on our lives. Therefore it can be quite open!

As we've now had yeses fro pm everyone it looks like we are on for Tues 28th. We meet in the cafe under the Sinnaker Tower and looks like 1.30 suits everyone, if you can't get there by then were usually around for a couple of hours so don't worry if you're late. I think there will be 5 of us, plus you, so we will look out for you. This isn't an organised as such meet up, just ladies in the same situation who live around the Portsmouth/Hants area therefore there's never a format, we just chat! Oh, and have tea/cake/sandwiches depending on what we fancy.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

I was diagnosed 6 months ago (April this year), 11 years after "completing" my treatment (surgery, radiotherapy & chemotherapy). I'd agree with the dark rollercoaster description. I have found this site really helpful and the local meetings really friendly and encouraging - I believe one of the group lives on the island too? If you could make it, try to join us as I really believe it has helped me.

 

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Re: Support group for secondary BC hampshire/Winchester?

hi ladies. cant belive im doing this! i had breast cancer 17years ago, did chemo and radio plus Arimadex for 5yrs. On new years eve this year i was diagnosed with secondary breast cancer in AE, just about every where. since then things have been one dark roller coaster ,sickness, pain, no support and poor treatment . 

   Most of the time i have felt like i have moved to another planet, dont fit into any box and have lost any role i ever have had. Thank god for the tv, thats how i found this site. i dont have internet and was unaware you folks were there!!! i know,!!! but not everyone has or knows how to do this stuff, bare with me as im not sure what im doing. i would love to meet up with a support group.

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Re: Support group for secondary BC hampshire/Winchester?

Hi all

sorry not been on here for a while but this retirement lark is busy isn’t it 😂😉 Helen has been in touch and let me know about 28th and yes I can do that day, looking forward to seeing you all.

Great news your staying on your treatment Nicky. I have everything crossed for your CT results Helen. I’m more than happy to meet earlier Nicky as it must be a pain travelling back in rush hour(s). Spinnaker Tower is great for me, esp as I’m starting an art course Tuesday mornings (I’m rather rubbish at art but I’ve always fancied myself as an artist 😄). 

 

JudyW47: sorry you’ve had to join us, but as Nicky has said this is best place to be, everyone is in the same boat and really supportive. I live just outside Portsmouth too so if you ever want to chat I’m here, just message me. It’s a scary at first but these girls on here are great. Hopefully meet you on 28th.

 

love to all, keep well and warm

 

love

 

Julia Xx 

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Re: Support group for secondary BC hampshire/Winchester?

Thanks Pippy, but I'll be going straight from work so will be on my bike - now I know where to park.