Support group for secondary BC hampshire/Winchester?

[nicky08]

Yes, it's good to see you posting Liz and I hope everything went smoothly with your op, it sounds like it did. Looking forward to seeing you and all the other Hants ladies this afternoon.
Nicky x

[swanie]

Hi Liz

So pleased to hear from you and you are doing so well.  It will be wonderful to see you if make it on Friday.

to everyone Winchester City centre is in a state of christmasmania when i was in on Tuesday the one way system was pretty gridlocked so if you can avoid that so much the better.

Really looking forward to seeng so many people - take care

Jacquix

[NannieSpiky]

Hi ladies
Thank you so much for your good wishes- means a lot. I am recovering well from op and had staples taken out today,29 in total, but it is a very neat scar and should sleep easier tonight. I am struggling with my vision so hope thi e- mail makes sense as the letters are blurring into each other but maybe this is due to the swelling and will settle in time. Anyway, I am very hopeful that I shall be there Friday and it will be lovely to catch up with you all.
Kirstie - sorry to hear that things have not been too good for you but hope you are coping ok and it would be lovely to see you again.
Valia- would also be good to see you if you are feeling ok but I know that you just have to go day by day with the chemo - hope Friday will be a good day and you make it.
To all the other healthy(!) ladies, take care.
Liz x

[valkeh]

Dear Liz,

I hope operation went well! I only got online today (after 2nd chemo). Previous one made me a bit unwell with high temperature etc. Better now. Let us know how you are getting on. You are in my thoughts and you will be in my prayers.Stay strong girl.

Kirsty sorry to hear your news.I totally sympathise. I wish and I hope E/E to work well for you. It's agood treatment, you are flexible with it and SEs are bearable. 

Looking forward to see you all on Friday

Lots of love to all and especially to Liz

Valia

x

[StickiVicki]

Hope everything went well for you Liz. Just got internet access yesterday evening where 

I am at the moment, so busy trying to catch up. Been off the web since Wednesday. Hope to make it on the 13th. Thinking of you all especially Liz and Kirstie.

Vicki xxx

[nicky08]

Dear Liz, you will also be in my thoughts and prayers, as you always are. I wish you strength to get through this operation and the WBR afterwards. Hoping all goes according to the plan and we would all love to see you on 13th if that's possible for you. Take care.
To everyone else on this thread, it will be lovely to meet up on 13th for everyone who can make it. I should be there, as long as appointment tomorrow doesn't throw up any spanners, which I'm not expecting it to.
Good luck to everyone changing treatments and all those whose treatments are working well.
Nicky x

[Kirsti]

Dear Liz
You will be in my thoughts and I wish you luck and love. Stay brave and strong. I will say a prayer for you. I am not really a praying person but I will keep my promise and pray for you. Xx

I have had rubbish results recently as mets have now spread to lower spine, right femur and 3 new lesions in my liver. I have begun the e/e combo and am in my fifth day with no nasty side effects so far. If all is well I will see you all on the 13th. Love to everyone Kirstie xx

[NannieSpiky]

Hi Ladies
Latest update is I have recovered well from SRS but I am now going into hospital tomorrow for operation to remove brain met that was too big for SRS. I am starting to feel scared now as I really didn't want to go down this road but life isn't dealing me a good hand at the moment. Afterwards I will be having 10 sessions of WBR as there is a high risk of recurrence due to the fact that the tumour has grown a lot in the last couple of months and this will give me the best possible chance. After getting the funding forSRS I never thought I would be in this situation but I am and now have to hope that this journey is not going to get too rocky for me but I know it's going to be a tough one.
If I am well enough I hope to be there on the 13th but I will probably post and let you know how things are before then.
Please say a prayer for me and hold my hand.
Liz x

[swanie]

Hi there - it looks like we will be quite a merry throng on the 13th.  If you are not sure where Winchester Discovery Centre is you can google it.  I will try and get some tables sorted for us.  If you like looking at pretty things they have an exhibition of Japanese Cloisenne enamal work on as well.  If you fancy taking out books, DVD's etc remember you can drop of off at you local library when you are finished with them.

another thing if you are currently using urea based cream for hands and feet I can get the following at trade price for you.  Simply Feet Cream is really nice it is parabens free and contains olive oil and papaya, lavender and mint  amongst othe nice stuff and smells pleasant as well.  Big (500ml) tubs are £10.99 and small (56g ) tubes of the 25% urea heel balm are £2.99.  If you are interested let me know by Friday this week and I should have it by 13th.  I have an account so you can pay when you collect.

Beginning to get excited about Christmas now

Love Jacquix

[StickiVicki]

Have put the 13th in my diary and on the Calendar on my PC so I should remember ... watch this space ...

Vicki xxx

[valkeh]

Hello lovely ladies.

Thank you for all your kind words/thoughts. I had the 1st chemo yesterday. Feeling not too bad today but still early days to judge the SEs.

Sounds like the 13th of December it will be a popular meet up:-) Can't wait to be honest.It will be very good to see you all and have a proper catch up. 

Nicky,Kirsty, Jacqui: you are so kind and your words moved me. I hope I will be able to walk- I try to go out for a walk everyday. That's my strategy 🙂

Take care ladies.

See you soon in Winchester and of course please keep post your news here.

Valia

x

[nicky08]

Hi ladies
Valia - so sorry to hear that the E/E combo didn't hold things at bay and it must be a blow to go back on IV chemo, however I hope it does its job and sorts out your progression. It would be lovely to see you again on 13 th if you can make it but if you'd like to meet up some other time please PM me. Like Jacqui I no longer work, so am free most days.
Kirtsti - hope the rads help and it sorts out your aches and pins, sorry I can't add any more but I can only see Jacqui's post so can't remember all you said! Looking forward to seeing you on 13th as well as any other ladies that can make it.
Good luck to all Hants ladies with current, or new, treatment.
Nicky x

[swanie]

Hi Kirsti

Great news that you have had your RT I am sure you will start to feel more comfortable soon.  I stopped work a few weeks ago and like you I found it both a relief and rather weird and sad, I have worked for so many years - since I was 17 and over the last 3 years worked hard to build up my own private Podiatry practice.  It was hard to finally admit I was not able to hold it all together.  The plus side is that I have the time and energy for lots of other things as I am sure you will.  Look forward to seeing you on the 13/12/13.

Cheers for now Jacquix

[Kirsti]

Hi everyone, ive just caught up with all your posts and so much has been going on.

So sorry to hear that your latest results were poor Valia, it's so scary and I pray the chemo will be easy on you.

Again, Jacqui and Liz, I'm sad I've not been able to meet up for so long. I've finished RT and work are now in the process of retiring me on the grounds of ill health. It's such a double edged sword isn't it. Glad to get time to be me, sad at the realisation of such a massive change to my life.

Anyhow, I really want to meet up so I'm on for the 13th.

I hope everyone is managing ok, I send love to you all, Kirstie xxx

[swanie]

Hello again

Brainwave - suggest we meet at the Discovery Centre (library in old speak) at 14.30  they have a big coffe cafe area and it is a nice environment.  Also very near the station.  The 2 nearest carparks are the Cattle Market on the corner the Andover Road and Worthy Lane and the Tower Car Park (google parking Winchester).

The Christmas Market is open until quite late - 9.00pm I think so folk can visit before or after coffee and chat.  If you fancy going as a group post your ideal time and see ehat we can do.

Valia - so sorry you scans were so bad, bad news about having to go back to IV Chemo.  If you find you want to come but cannot drive/walk I am happy to pick you up from home or nearby.

Kirsti - hope you have had you rads as Valia said not so good to start with but excellent once the bad bit os over.

Liz- hope your brain is OK and we get to see you..

I am on my 3rd day of Cap and so far so good few SE's long may it last.

Look forward to seeing you all and getting my Christmas Mojo going

love JAcquix

[valkeh]

Hello girls,

I haven't been online for a while. After I had a lovely catch up with Jacqui, I had my 6months scan- rubbish results. Significant diseases progression. It was so difficult/ hard/harsh/ upsetting/scary to be at the low side of the roller coaster again. I start chemo tomorrow. I had a port fitted, generally have been very busy seeing doctors, thinking about treatments etc. I went away for my birthday- 09/11 and that was such a good present to me. It helped to get myself together and kind of find my strength.

So yes, I will be able to join the group on 13/12. Happy to meet wherever. Well, chemo number 2 will be on 9th of December so I hope I will be well enough to drive/travel. Anyway I look forward to see you all. One little change, maybe I will be covering my head with scarf again... 😞 I am sure you won't mind.

Catching up with previous messages:

@Liz: so pleased to have the best treatment! Hope you are doing OK

@Kirsty: hope you started radio now. I found it quite painful at the begging (doctor said it was a good sign as it meant treatment worked) but it will get better!

@Jacqui: I am so pleased you started your treatment. Hope the pericardiac fluid will be get absorbed without the need of a drain

See you all in December

Valia

x

[nicky08]

Hi
Yes, it was good to see everyone last week, new and 'old' faces. I do like meeting up and being able to have an honest chat about all of our problems with secondaries and the treatment so going to a show or something like that wouldn't give us the chance to have a good old natter. Not that it wasn't a good suggestion to do something different. I am happy to meet elsewhere on 13th if it suits everyone else, maybe a garden centre cafe somewhere near if we can all get to it, thinking of Liz here. I'm also more than happy to come to Winchester to see the Christmas market and will probably take the train if parking is so bad. I visited it last year with my Mum and we found a tea room nearby the general market which certainly wasn't too busy so I think we can look away from the Refectory if we are still meeting in Winchester itself.
Hope everyone's treatments go well, do PM me Jacqui if you want any extra advice etc about Capecitabine and hope you get on well with it.
Nicky x

[swanie]

Hello All

It was lovely to see folk last week especally a new face ace Vicky and what a surprise to see liz looking so bright after having STR - hope you are still feeling bright and nasty SEs have not kicked in, rads can be sneaky like that.

Also a big thank you for the push to get myself sorted.  Saw the ONC today after my GP contacted him - I am now on the peachy wonders (Capcitabine), took the first dose this evening.  Also they have found quite a bit of fluid around my heart so had an echocardiogram and saw the cardiologist today as well.  They are going to do another scan in 8 weeks and if there is no improvement drain.  

Thought that Friday 13/12/13 would be a good date to meet next time. The Chistmas market is on so I have mixed feelings about meeting in Winch - the refectory could be packed and parking tricky.  I will rack my brains - if anyone has other ideas do let me know.

Cheers Jacquixxx

PS Kirsti - hope you are OK.  Let us know if we can help, support etc...

[StickiVicki]

Great to meet some of you in Winchester yesterday.  I picked up a copy of Christmas in Winchester 2013 in the Refectory and they have an advert for a panto at the Theatre Royal in Winchester 11 Dec - 5 Jan http://www.theatreroyalwinchester.co.uk/snow-white/

Don't know if anyone is interested because going to a show was mentioned and we could do a show and Christmas all in one ... just an idea.

Vicki xxx 

[StickiVicki]

Really looking forward to meeting some of you ladies tomorrow.  Will look out for the magenta coat ... I always have a big black backpack with a teddy bear reflector dangling from a zip (really!!!) with me and will be wearing a glittery Poppy brooch.  I walk with two Nordic poles.

[nicky08]

Hi Liz
That's great news that you are getting a treatment that you need, and I know the WBR wasn't what you would have wanted. I'm sure it will all go well, if a little uncomfortable, but it will be worth it I'm sure.
Should be there on Friday, thanks for reminding me though as I seem to have thought it was much further off than it is, having not quite realised were already in November!
Nicky x

[Kirsti]

Good luck Jacqui, hope everything goes smoothly xxx

[NannieSpiky]

Hi all
Will miss meeting with you on Friday but will be having my denosumab injection at the hospital so hope to make the next meeting.
Off to the Cromwell hospital in London tomorrow for the next three days to have gamma knife treatment for my brain mets. Can't believe the funding has been granted and things have happened so quickly although I think the fact that I had a full blown seizure a couple of weeks ago has moved things along a bit. Not looking forward to having the frame fitted to my head but I know that this is the best treatment for me to have especially when everything else is stable at present. I am sure that I can overcome 15 minutes of pain!
Will report back at a later date with, hopefully, a pain free head.
Best wishes to everyone else and hope you are all coping with your various treatments and results.
Liz x

[swanie]

Hi there

It will be great to see a new face Vikki.  Look for a lady with a bright Magenta coat when you arrive.

It was good to catch up with Valia - it sounds like she is doing well after having her liver mets zapped and has enjoyed seeing her family.  The good news is that she should be able to join us on Fridays from the end of Novemebr onwards.

Hoping to see Kirsti and Nicky on Friday all going well.

Love to you all - Jacquix

[nicky08]

Hi Hants ladies

Hoping that Jacqui and Vallia got to meet up on Weds, sorry I couldn't be there but hope to be at the next one.  Nice to have a few extra members joining us as well.

Kirsti, that is Cr@p, as Jacqui has said.  Hope that the rads sort out the pain and the different hormonal will do its job as well.  Are you on denosumab? Or maybe a different bone strngthener?  I wonder if it's worth asking to change if you're not on denosumab yet, as it does seem to be the one that quite a few oncologists are switching people to.  Anyway, good luck with everything and I hope you get to the next meet up, it would be lovely to see you again.

Hi to everyone else, hope you are doing Ok with your various treatments.

Nicky x

[StickiVicki]

I can make it to Winchester on 8 Nov 2013 for 2.30pm if it is ok that I join you.  I have put it in my PC calendar and diary.  Think I might make a day of it in Winchester.

Don't know if you are aware that there is a Christmas market at the Cathedral between 21 Nov and 22 Dec 2013.  I went to the last day last year and got some great bargains and had a really good day in Winchester with some friends from work.  There is an ice rink there as well, but I think you need to book for that.

http://winchester-cathedral.org.uk/christmas/christmas-market/

[swanie]

Kirsti that is total c*$p I was so hoping that your pain was 'just one of those things'.  It is so frustrating when you are not listened to.  I hope the rads help and the change of drugs.  We would love to see at the next get together - at the moment it looks like Nicky and myself, Liz has a hospital appointment.  If it turns out you can't I would be happy to meet you some other time and be a shoulder for you and I am sure others would as well.

Take care Jacquix

[Kirsti]

Hi everybody, apologies for not posting recently. I had scan results yesterday and sadly there has been quite a bit of progression. I now have large mets in first five vertebrae and left femur so radiotherapy will begin again in the next week or so. This may be followed by chemo but will need to see what the RT does first. I have also changed from Letrozole to Aromasin as the bugger appears to have become resistant. At least I now have an explanation for the pain I have been experiencing. I feel quite angry because I asked for a bone scan and my oncologist said I did not need one as I had recently had one which showed no progression. So again, if I had not rang back insisting that I was scanned this would have continued for a few more months. I had an X-ray yesterday and it appears that the femur is not fractured so at least I don't have to undergo surgery. I will try to make the next meeting, could do with a bit of a girly time. Love to you all Kirstie

[swanie]

We will be sorry not to see you Beanbob.  Do keep an eye on the thread and hope to see you next time.  Hope all is well with you - I seem to remeber you had scans a while back.  Have a lovley weekend away.

Are you OK Kirsti and Sarah.

Jacquix

[beanbob]

I've messed up dates: we're away that weekend for a long weekend.  So so sorry.  

[beanbob]

8th november is in my diary - thank you for naming a date and keeping us in the loop. wishing you well till then.

[swanie]

Hi there

Thanks for replying Nicky - it will be lovely to see you in November. It looks like Liz will able to make it as well so can we stick to Winchester, it will be easier for you.

See you on the 23rd Valia, don't know if anyone else will be coming.

Take care all of you - Jacqui

[nicky08]

Hi ladies

Sorry, I don't think I can make the Weds meet up as its a bit late for me to be tackling the traffic back from Winchester.  However, I hope to make the one in November, fingers crossed and all that!

So far I am recovering from my latest heart procedure and hoping it keeps me out ouf Atrial Fibrillation, all brought on for those who I've not told, by my chemo back in 2008. It is an ongoing recovery with 3 months being the normal amount of time needed for the heart to fully recover from the ablation procedure I had done.  I will, most likely, need it done to a lesser extent again and, again, this can't be done before the 3 months recovery is over.  I hope that this does put me on the road to being able to have more intensive, and required, treatment sooner rather than later.

Hope everyone is coping with their treatments and all of the rubbish that these things bring to our everyday lives.  I'll keep checking here in case the dates change but it would be nice to catch up with whoever can make it on whichever dates we manage.

Nicky x

[swanie]

Good afternoon Ladiesit looks like Autumn is well and truely here.  I have 5 rather soggy chickens down the bottom of the garden.

Great news Nicky about your scan and the heart jolt has work so far - fingers crossed you finally get the best treatment for you.

Hope things are looking up for Liz and no more scary episodes an your pain getting sorted Kirsti.  Also your scan has't got any new blobs in the picture Beanbob.

Some new dates (note the plural here!!)  I am meeting Valia at the Cafe Nero coffee shop (top end of Winch High street near the Butter Cross) on Wednessday the 23/1013 at 4.00pm if this works for you please join us.  

If you are happier with the Friday 2.30pm slot I will grab a table for us at the Cathedral Refectory in Winchester on Friday the 8/11/13.  Sorry it is such abig gap but I am away for a couple of weekends and being greedy do not want to miss out.  

It would be helpful to know who is plannig to show on Friday - if it is just me and Liz I will relocate to Hedge End to save Nick the drive.

Take care and hope things improve for you all.

Jacquix

[nicky08]

Oh dear, we are all going through it right now aren't we? Liz, that must have been so worrying but its good the CT didn't show up any more of those nasty little *uggers. Hoping you get a good solution soon, I saw that you had written somewhere that surgery might be an option? Sorry to hear of everyone else having a few wobbles as well. I had expected to be 'wobbling' a lot right now but my CT results last Friday were good, all liver mets have shrunk considerably and bones are showing signs of healing, phew. I really did expect some progression so this was the best news ever and gives me a bit of a rest from contemplating the next chemo option which is tricky for me with my heart problem. The 'procedure' was one for my heart for those that don't know and that went well last week so, fingers crossed, I'm gradually getting there in terms of receiving the optimum treatment that I need but can't at the moment have.
As to meet ups I'd prefer not to meet over the weekend if possible but can make most times during the week if a better day or time is suited to more ladies.
Chin up chickens.
Nicky x

[swanie]

Blimey - you all seem to be going through the mill at the moment.

Kirsti - will PM you, have some thoughts.

Beanbob - yes it is horrible when these things happen - waiting for scan results is really tough.  I get quite unnerved.  Keep us posted.  

Liz - what a fright.  Poor Nick, fits are quite scary to watch, especially when it is someone you love.  Pleased that the scan did not show up new grow.  Hope that get moving on some some definite treatment soon.   You don't want too many moe of these episodes.

Nicky - hope thing are OK with you and you are recovering from you last proceedure.

Just a suggestion - hoe would an occassional weekend meet-up go down with you?  It would allow the workers to join in.  Doesn't have to be every time.  You may feel it takes away from valuable family time.  Please feed back in the the week then i will post a date.

Cheers Jacqui

[NannieSpiky]

Hi just wanted to send my best wishes to those going through worrying times at the moment, including myself!
Had a full blown seizure whilst eating my dinner Monday night but, fortunately, Nick saw it starting and was able to prevent me falling onto the floor and doing further damage. It was more frightening for him as I have no recollection of the fit and the minutes that followed it. When I regained consciousness, there was a rather dishy paramedic dealing with me (small consolation!) and I gave him some very vague answers. Kept in hospital overnight and given ct scan which showed no change from the last one, thank goodness, as I was scared that further brain mets had developed. They think it may have been the fluid that caused the fit so have now upped my steroid dose and been given an anti convulsants drug to take. Back home now but feeling rather achy, probably result of thrashing around during fit.
Enough excitement for me - good luck to everyone else undergoing tests and hope we can get together soon.
Liz x

[Kirsti]

Sounds like many of us are having tricky times at the moment, I'm sending positive thoughts to you Beanbob and will be thinking of you all xx

[beanbob]

Hi all, I am sorry I too wasn't there - . My news is that tumour markers have gone up and Onc called me in for scans this week. Trying to be calm till I get results. You all know how challenging that is.

[Kirsti]

Hello everyone, so sorry I could not make it on Friday, I could not get away from work. I have been having lots of pain the past week, mainly my groin, leg and back. I will contacting my oncologist tomorrow because the night time pain is unbearable. I am taking soloadol but am now completely constipated. Any advice re pain meds and constipation will be great fully excepted. I've had pain but not at this level for a number of months. My last scan showed nothing there (left hip area) and I was told it was just wear and tear. However I am convinced it must be something more sinister now, it is so so painful. Anyway, that's enough moaning for now. I hope you are all ok and I will post again soon xxxxx

[nicky08]

Hi Jacqui, sorry not to have been there this Friday but would hope to make the next one. I am free most days, hospital appointments allowing, so am happy to try a different time if that suits some more of us Hants ladies. It would be good to see some of the new faces I met back in the summer when we all met for the first time.
Hope you and Liz were able to enjoy your tea.
Nicky x

[swanie]

Hi there

Hope your proceedure went well Nicky and yu get good results - it makes it seem worthwhile then.

Sorry you couldn't it Kirsti and Sarah.  Hope your scan is good Sarah and that you are Ok Kirsti.

I will post another date up soon - hope more folk get on board now that the holiday seaon is drawing t o a close. Liz and I would love to see more of you and hear your news.

If Friay pm is tricky for a lot of people please let me  know  and suggest an alternative- maybe we can work round it.

Take care all -  Jacquix

[nicky08]

Hi ladies
Hope you all got together yesterday, who ever was around, and had a lovely tea. I was shattered after my heart procedure and hospital stay earlier in the week so definitely wasn't up for it. Hopefully will be able to join you next time. Good luck with all your treatments, especially Liz as I know you are going through a few options at the moment having seen your update on another thread.
Nicky x

[SP0]

Hello all, hoping I'll be able to join you next Fri, pending scan appointments.   Sarah.x

[nicky08]

Hi ladies

Unfortunately I won't be able to make it on Friday as all my appointments have landed in the same week, having been contacted late on Friday about the heart one.

Hope you catch you all at the next meet up and wishing everyone well with their treatments.

Nicky x

[swanie]

Hey Kirsti - 

It will be great to see you.  I have been wondering about you and hoping that you are OK.

I will be there Winch. Cath. Refectory at 14.30 27/9/13, also I am expecting Liz, maybe beanbob  and if appointments permit Nicky.

Take care Jacquix

[Kirsti]

Hi everyone, is a meeting still set for 27/09? I would love to meet up xxxx

[nicky08]

Hi ladies, oh dear it does look like 20th is a no go 😞 At Jacqui's good suggestion we will move it to 27th as there does seem to be a couple more who can make it, hopefully some of the other Hampshire ladies as well who came to the first meeting, if you are around? Having said that I still can't commit to it as I'm waiting for an appointment date, once I've heard I will be able to say if I will be there on 27th or not. Hope everyone is coping with whatever life is throwing at you right now, its not easy.
Nicky x

[swanie]

Hi Nicky and Beanbob  I am happy to meet you folk on the 27/9/13.  Is Winchester stillOk for you both?

14.30 Catherdarl refectory.

It would be lovely to see you both

Nicky - I can still meet up with you on the 20/9/ if you like.

Jacquix