Unfortunately I didn't get to Liz's funeral, I had hoped to but couldn't get there from where I was in the morning. Knowing how Liz had planned it herself, as she told us, I'm sure it would have been very personal and moving and I hope that this would have helped Mick and the family at such a difficult time, it really had been something Liz had wanted to do.
She will be remembered by all of us Hants ladies who met her and we will raise a cuppa to her when we next meet.
I hope everyone else is coping with various changes to treatments and that as many of us as possible can make the next catch up that Jacqui has organised. It is such a supportive group and anyone else in the Hants (or surrounding) area is welcome to join in.
Take care all
Nicky x
Dear Nick
I hope to be able to attend Liz's funeral on Friday however if I can't make it I will, like Jacqui (and I'm sure all of us Hants ladies), be there in spirit and thinking of you all.
Nicky x
Dear Nick
You have nothing to apologise for. Sadly I will be away that Friday and unable to attend the funeral but I will stop and think of Liz at 13.00 and be there in spirit if not in body.
Thinking of you and yours at this difficult time and may happy memories of Liz help see you through.
Jacquix
Dear Nick,
I was one of the priviliged one that I have met your wonderful wife Liz during our meet ups. I am deeply sorry and upset to hear the news. I send you and your family my heartfelt condolences. Liz will never be forotten and she will always stay with us in our hearts. Hope you get strenght to go through this difficult period. You and your family are in my prayers.
Valia
Dear All,
We all seem to be havin a bit of a rough time at the moment with progression and other illness all compounded by the loss of our lovely Liz. I hope this does not put people off the idea using our little group for for courage and cheer - indeed maybe we need it more now than before. So here is a suggest for the next gathering something a little different.
Friday 6 June at 13.00 - at Tiffins Tea Rooms West Street - New Alresford.
Quite a few people are busy at the end of May hence the delay. Thought the earlier time would allow the option of lunch or just cake and coffee (even both) as people wish. Tiffins has just been refurbished and Sharon the owner will reserve a table for us. It is at the bottom of the hill. The best place to park is the car park based at Perrins School - Jacklyn's Lane (£1.50 for a whole day). Street parking has a 1 hour time restriction New Alresford is just 6 miles out of Winchester on the Alton Road - very easy to find and is a pretty place wth some nice shops if you want to potter for a bit. Also it will avoid getting tied up in Winchester rush hour traffic.
hope to see a few faces - take care and remember you can always organise your own thing with others if you want to meet at an earlier date.
Take care Jacquix
Dear Nick,
I was sort of expecting this post when we did not see Liz on Friday. She has alway been so determined to be there no matter how bad she has felt my instincts knew some was very wrong. She struck me as a very stubborn lady when it came to not letting illness stop her doing what she wanted.
Liz was the the first person to get in touch when I first posted on the forum with the aim of getting this group together and for a while it was the 2 of us so we got to know each other quite well. I know how much she loved her family and you were all so important to her - she threw everything she could at fighting her disease an make sure that she could stay with you as long as possible. You must all feel that a terrible hole has been left in your lives.
She was always so considerate and always asked after others and gave generous support beore pressing her own needs. Her kindness knew no bounds and I will always remember her.
Like Nicky I would like to come to her funeral if that is possible to say my good byes. You are welcome to PM me under my user name or perhaps Nicky can pass on the information.
It was good to have meet you when you bought Liz to our meetings - we will all be thinking of you and your family.
Yours in Friendship - Jacqui
Hello Nicky. The plan of action is to get things started asap. Over the last 6 weeks or so my platelet count and liver function have been dropping, and continuing to do so. Need an Echo CG to check my heart is ok for Herceptin, and that will be given in conjunction with Paclitaxel. Should be starting next week and they two drugs will have to be given over maximum time at Southampton General to start with. That means 2 hours for the Paclitaxel and 6 hours for the Herceptin. After that, and if all goes will, I should be able to have the combo in reduced time doses at Oakhaven Hospice, here in Lymington.
Brain CT showed I have nothing in my brain, that shouldn't be there, but there is an area of bony involvement in the top of the left orbital lobe of the eye, which probably accounts for the droopy eye. This is responding to the Dexamethasone however. My breathlessness may be because the cancer is getting in my bone marrow, but time will tell.
Not the best news, but at least I know what I am dealing with now and can just get on with it. My preference was to let the Aromasin kick in, but as that can take some time they are moving ahead with the big guns. Anyway as compensation I just bought myself a top of the range iPad Air to make it easier to keep up with life. Hope you are doing well and that I will get to see you all soon. Vicki xxx
Sorry I didn't make it in the end. Was taken to hospital by ambulance at 5am with pains in my left arm. Everything has turned out to be ok, but I do have an enlarged heart at the moment and having just started steriods and had a CT scan yesterday morning, as well as starting on Aromasin I though it best to get it checked out so I wasn't having a bad interaction going on. Or something worse.
I was eventually released about 2.30 when my sister-in-law picked me up and it was all a bit late by then, and all I wasn't to do was go to bed and sleep.
Back to the oncologist on Tuesday and possibly they will have a plan Stan.
Vicki xxx
Dear ladies, what a rotten time our group is having at the moment
Sorry to see so many of us are having further progression but hope the new treatments, once decided, are quick to kick in and bring back some greater stability. Also sorry to see there won't be many of us there today but will be thinking of all of you who can't make it. Having just had a great big thunder clap overhead and pouring rain I think I will be swimming down to meet up today
Take care all and looking forward to seeing everyone that is able to make it.
Nicky xx
Mara, I have just changed surgery, though only across Lymington, but even that seemed to be a bit traumatic because my notes still had to go via Winchester rather than about 200m through the churchyard!
Make it if you can, but there is always next month ... though at the moment everything is going very pear-shaped on me with a chest infection, passing kidney stones, liver function still going downwards, enlarged heart and a confirmation that I now have liver mets. Had another CT scan today and have to get another blood test on Monday and back to clinic at Southampton General next Tuesday. Looks like I may need to go on to chemo because the liver function is getting worse and there may not be time to allow the Aromasin to kick it after a change from Letrozole.
Energy is low, but still hoping to make it tomorrow on the grounds that I need some new slippers anyway and M&S will probably have a good selection being the extra motivation other than meeting other metsters.
Vicki xxx
Hi Kirsty,
Sorry to hear you have been a bit poorly recently. Make sure you rest plenty and eat whatever you can enjoy.I hope the results of the U/S tomorrow to help with the diagnosis and you will receive better treatment for your current problems. If you like at any time some help, company, lifts from to our meetings etc please let me know. The days I have not chemo I could be a bit useful 😉 Lots of love. Valia x
Hello ladies. I will try to be there too.Possibly a bit later around 2.30 as I work half day. Looking forward to meet the news ladies.
Happy Easter everyone. God blessing all.
Valia x
Welcome back Mara. Not sure that some of the roads in Devon are too quiet today, it sounds chaotic out there today!
Looking forward to seeing you on 25 April, a week today! Hope the weather will be as good as it is today.
Vicki xxx
Hope the MRI doesn't show up any nasties Vicki but, as Jacqui has said, ask away regarding treatment options if the little blighters have moved around. Hope you can make it next time especially as you've set so many self reminders!
Looking forward to seeing as many of us as possible in a week or so time. Hope treatments are being kind to you all and you have time to enjoy the sun we're getting - it makes such a difference doesn't it?
Wishing you all a lovely Easter with family and or friends
Nicky x
I had my MRI done today and will get the results next week.
I have just changed GP surgery and hope I can make a new start with a completely new crew. After just one visit they seem far more supportive. I had to go to the new surgery last week because I have a bit of a chest infection and so I am nearing the end of a week on penicillin. Still can't breath completely normally, which made the MRI a bit difficult because I had to do quite a lot of breath holds, but the lady doing the scan was very good and tried to make them as short as possible, and let me know the second I could start to breath normally again. I got through everything without having to do a second take, though I have to admit that I nearly lost it a couple of times! I did remember to smile for the magnets, so hopefully the pictures will be good and show up everything that it needs to show.
I have the date in my diary and on my computer callendar, and I will also put a sign out somewhere to remind me, and I should make it this time ... fingers crossed.
Vicki xxx
Hiyah All
especially Vicki. You have every reason to forget it sounds life is very frenetic at the moment for you. I really hope that the progression is a false alarm if not there are several folk with Liver and bones (our Nicky being one) who I am sure will be of help to you. It just seem awful when things go so slowly. I think if your relationship with your GP is falling apart it is good to change I feel so lucky with mine and it is a real help.
Hope you can make the next meeting but remember they are for you and not compulsory - we just missed in 'a where is Vicki hope she is OK way.'
Hope all you other folk are OK and moving forward - and yes I confess I suggested M&S because I need to shop for spouses PJ's - he is going through PJ jealousy because I hve some and he doesn't.
I will be in the M&S Coffee shop at Hedge End from 14.00 onward - see you when you get there.
Love Jx
Hiyah All
especially Vicki. You have every reason to forget it sounds life is very frenetic at the moment for you. I really hope that the progression is a false alarm if not there are several folk with Liver and bones (our Nicky being one) who I am sure will be of help to you. It just seem awful when things go so slowly. I think if your relationship with your GP is falling apart it is good to change I feel so lucky with mine and it is a real help.
Hope you can make the next meeting but remember they are for you and not compulsory - we just missed in 'a where is Vicki hope she is OK way.'
Hope all you other folk are OK and moving forward - and yes I confess I suggested M&S because I need to shop for spouses PJ's - he is going through PJ jealousy because I hve some and he doesn't.
I will be in the M&S Coffee shop at Hedge End from 14.00 onward - see you when you get there.
Love Jx
Forgive me Mother, for I have sinned ... I know, 4 Hail Mary's and don't do it again ... but I have to confess that I forgot all about it until about 3.30, which was a bit too late by then.
I have a possible progression into my liver and have spent four weeks hassling Southampton General to get a scan done. Not pleased that the CT scan showed this on 22 January, and by the time I eventually get the results it will be three months later with no change of treatment. Will be having a MRI done and they say that my artificial hips won't be a problem because they are probably titanium, and the newer one may be ceramic (I even have the bar codes of the items they put in!), though I know less about the first one done in Jan 2008.
I am also in the middle of changing GPs after one screw-up too many, so hopefully I can forge a relationship with someone who won't constantly tell me to go away and come back when things get worse. Like Stage IV, how much worse does she want. Have also nearly got my retirement on health grounds sorted out at work and access to my pension as though I was retiring at the usual age (don't think I will make it for another 13, or more years the way things are going). Still trying to sort things out with my personal pension.
In about a month they should be starting work on the extension of the back of my house, which will involve taking down the existing lean-to conservatory (to big it up) and extend it right across the back so I can have downstairs facilities which I don't have right now. That can be a problem now I am not as fast on my feet as I once was!
Will put the date in my diary and try to remember it in time this month!
Vicki xxx
Hello Ladies - I hope you are all well enough to enjoy some of this lovely spring weather. I can only repeat what Nicky said - it as lovely to see so many and aren't those naughty little stories coming out. You now all tell the family we don't just talk about cancer.
As discussed the next meeting will be taking place at the M&S coffee shop Hedge End to give the Southern county ladies a break from driving north. Suggestd date 25/4/2014 Friday. How does 14.00 sound ? I think 13.30 was just a bit too early.
Hope this helps Vicky - we missed you.
Liz hope this helps you as I believe you will have been nuked yet again but then on the road to being so much better.
Kirsti hope to see you and your glamorous holiday snaps.
Valia if you need a lift let me know.
Had a up down week - Monday full bone scan results - rubbish they have really spread so we have decided to stop denosumab etc as that is not doing anything now. I have started back on Anastrozole - so far with out any ill effects. On the plus side the lungs are finally fixed - the pleurodisis has worked well and the right side does not have enough to drain - so no more lung procedures for a while - hoping to hold out through the summer. My breathing is so much better. Waiting for physio from the hospice as I keep getting spaghetti leg syndrome and I will not even go into the pelvic floor issue.
Have now organized a fun few days in Holland with daughter and niece.
I hope everyone else has good news to share - love and Friendship Jacquix
Hi ladies
It was lovely to see so many of you (us?) on Friday - well done Jacqui again for organising us. Liz - what a big effort it must have been to be there but it was so nice seeing you and I hope things get sorted out asap with the nausea and also the next lot of treatment. Take care and look after yourself.
It was good to have a chat with so many of you and also to be able to have a laugh about things. It's so easy to talk to everyone and that has been a great support over the last year since we started meeting. I'm sure we must all feel the same - we can say things that won't shock us as they may do our loved ones so it is a welcome release not to bottle things up.
Looking forward to meeting up again very soon.
Nicky x
Hi Liz, have sent you a PM, which I'm sure you will see. Hoping that you are able to come on Friday but I think we will all understand if you can't make it.
Hope everyone's treatments are working - or getting tweaked in Liz's case to improve things like nausea.
Looking forward to meeting up again.
Nicky x
Hi there
Hope your scan goes well Valia and thankyou for your kind words.
I had a bone scan this morning results next Monday so I guess we will all have stuff to chew over next meeting.
I think Liz is slowly crawling back up the hill of feeling better and will make it next meeting. Fingers crossed.
Looking forward to seeing you all don't forget earlier start of 13.30 .
Love and friendship - Jacquix
Hello lovely ladies,
I haven't been on line for a while. Going through chemo at the moment is a funny game. Mood is all over the place...
It was lovely to catch up with you recently and also to meet the new friendly faces. I hope to get to know each other a bit more in the following tea sessions.
So sorry to hear Liz is a bit poorly at the moment. I send her positive vibes, thoughts, energy. All my love.
Jacqui, please do not thank me for something so small. I did nothing really. I was sorry to see you unwell but you are a strong girl. By the time we arrived you were back to your lovely self!
Look after yourselves ladies.
I have a scan next week to see if my treatment works... Stressful times.
Enjoy the sun!
Valia x
Thinking of Liz and hoping that Hospital/Hospice can sort things out for her and keep her comfortable
Got home later than expected from checking on my aunt. Got caught in the Oxford rush-hour on the ring road from Cowley to the A34 and then heard that the southbound side was shut because of a van fire. That was after my junction, but it was still slow for a while before the Sutton Scotney turn off, although by then they had one side open. Nice to be home though.
Vicki xxx
Hi there every - here is a new rebooted Jacqui - the magic potion, morphine, steroids mixed in with a bit of weekend sunshine.
Kirsti - are you OK I missed you want to hear about your hoilday.
Michele - there is no case of allowing abut it - this is just a meeting for tea for anyone who fancies joining in, I am just the bossy ex-teacher who tells everyone when to turn up. So pleased it was of help to you, the forum is great but there is nothing better than having personal contact. this is bleak and lonely disease sometimes especially at 3.00am sitting in pain on the sofa with the word asleep. Hope to speak next time.
Beanbob - hope you can make the next session work permitting.
Thoughts go to Liz who is beng very sick at present - she is being aken into hospital/hospice to get sorted fingers crossed for her.
Nicky - thinking of you relaxng in Nice - nice one.
Love to you All see you 28/3/14 13.30 (note new start but we will still be there at 14.30) Winchester Catherdral Refectory.
Must go for the Archers - Love Jacquix
Hi ladies
It was lovely to see everyone last Friday - well done again Jacqui for organising us for then and the next one. Nice to meet you Michele and I'm glad we helped give a different perspective on secondary BC. If you havent done already have a look on the inspiring stories section of this part of the forum. Many stories on there of ladies living with secondaries (mets) for many years.
Sorry to hear that you wwere feeling so unwell Jacqui. Having not got round to having a chat with you it was difficult to understand how horrible the treatment is being at the moment. I hope that your onc does listen to you and can sort this out as well as explain a bit more about the bone mets! Maybe a rads blast to your ribs if that is waht is causing some of the pain?
Sorry also to hear that you are still suffering Liz with the SEs of the rads and that other people's treatments are changing. A real up and down sort of a meeting in a way but I suppose that's what happens when we are all on different treatments.
Hope everyone has a better month than last month, however good or bad that was, and look forward to meeting again in Winchester.
Nicky x
Glad that we could help. The medical profession tend to give a sense of hopelessness rather than hopefulness that the cancer can be controlled and we can even get a bit better. Groups like this give you a reference point that there are others who have their unique diagnosis, but we are also the same. There is no need to explain what having metastatic breast cancer is like - we all just get it.
Hope you enjoyed Miranda Hart and that her gig was a suitable end to an inspiring day.
So you have been fired by the palliative care nurses ... I have been fired by Hospice twice already! The only things that matter is today and doing the best we can on the day. The day may be one for tears and anger, or it might be soaking up the winter sun and enjoying daffodils and other flowers that are in bloom.
If you have been scraping ice off your windscreen does that mean that you are considering driving again? Go on, become a Toad with the open road in front of you. Maybe a little bit at a time to get some confidence back that you are in control. Vicki xxx
1.30pm, Winchester Cathedral Refectory, Friday 28 March 2014 - in my diary as we speak.
Glad to hear you are feeling a bit better Jacquie. It is just good to see everyone, no matter their mood. ❤️
Vicki xxx
Good evening ladies - it was great seeing so many of you, sorry I didn't get round to chatting to you all. Also a big thank you for your good cheer in the face of my rather gloomy mood - it is not like me but I think things are feeling better. A special thank you to Valia who not only drove me there but also dealt kindly with a vomit fest.
I have a bone scan booked for the 17/3/14 - looks like things are bit wider spread than the Dr lead me to believe. Why do they do that? Any way all be be clear soon. Hope everyone else is progressing well with treatment and things stay stable. Good luck with your next lot of rads Liz - you have certainly had more than your fair share.
NEXT MEETING - thought we would go back to Winchester Catherdral Refectory. How do you feel about meeting a bit earlier - say 13.30 so that people can avoid the evening rush hour traffic. Proposed date Friday 28th March.
In hope of spring - Blue Skys and Happy Trails Jacquixx
Good evening ladies - it was great seeing so many of you, sorry I didn't get round to chatting to you all. Also a big thank you for your good cheer in the face of my rather gloomy mood - it is not like me but I think things are feeling better. A special thank you to Valia who not only drove me there but also dealt kindly with a vomit fest.
I have a bone scan booked for the 17/3/14 - looks like things are bit wider spread than the Dr lead me to believe. Why do they do that? Any way all be be clear soon. Hope everyone else is progressing well with treatment and things stay stable. Good luck with your next lot of rads Liz - you have certainly had more than your fair share.
NEXT MEETING - thought we would go back to Winchester Catherdral Refectory. How do you feel about meeting a bit earlier - say 13.30 so that people can avoid the evening rush hour traffic. Proposed date Friday 28th March.
In hope of spring - Blue Skys and Happy Trails Jacquixx