Hi,
I was wondering if there is anyone in the Portsmouth/southampton area?
I have sent you a private message as I am in your area but didn’t want to be too public at this stage.
Kate
Hi
How are your lung and bony met effecting you?
I’d been breathless for about a year before my lung mets showed up (I’d had loads of tests/ct/xrays etc) as I have a version called ‘lymphangitis’ so it effects my lymph system but don’t have any solid tumours although I might have a little one as I had a bronchoscopy on monday and the initial report is conflicting itself so don’t know if my lung has partially collapsed or not. Am seeing the chest physician on 18th sept so hopefully he can shed light on what is happening.
I’m currently having herceptin, zometa for my bones and capecetabine/xeloda and now on daily dexamthasone but have now got that down to 1mg a day. My breathing was so much better in Cornwall than here -just shows what the pollution does.
Last year, I could hardly walk as my hip was so painful and my breathing so bad but have had an enjoyable summer this year and been able to do things like sleeping in the tent in the garden with the children and walking round the whole of the Lost Gardens of Heligan. Paid for it though as the xeloda can make your hands and feet blister and ended up at the end of the week with massive blisters which had to be cut out so couldn’t walk for a week!. Now have damaged my left shoulder - initial side - and have lost feeling in my left fingers. It has improved so hoping it is just old damage from several accidents I’ve had during the years and not a new met!!
My hip pain improved dramatically whilst on vineralbine- a chemo - and starting zometa - a bone strengthener and now my legs are similar lengths again and I can move my left leg nearly normally again. However, I appear to have a new bony met in my sternum and the one in my right rib has got bigger but as they don’t hurt I’m not so worried cos at the end of the day it’s the ones in my lungs which are the big concern and that I have a small liver one as well that are the real worry.
You’ve presumably got my PM to you so you know where I’m being treated etc and more details of my life.
Hope the scan goes OK - it is alwys so worrying waiting for results.
How are you coping with the taxotere?. I’ve had 4 different cycles of chemo now and
definately found taxotere the toughest and made me constamtly ill. Really hoping that you do not feel that bad.
We’ve also been communicating on the ‘introducing ourselves thread’ so if you do decide or able to come to London - (why it’s booked over half term is area pain!! )Perhaps we can arrange to meet somewhere so can sit together.
Is there anybody else here on these forums apart from me and Fay from the Southampton/Portsmouth area then??!!!
Hope all goes well and keep in contact.
Kate
not Southampton but Basingstoke -20 mins up the M3
Jools
I am going to go to london, is anyone else going on here?
It would be nice to meet up
Fay :o)
Fay - I’m going to London so hope to meet you there.
The only way you can communicate me directly is to go to the www.bcpals.org.uk site and ask the admin there to contact me as the BCC will not allow private emails to be passed on.
Jools - are you going to London?
Just spent day with my mum in London going round Buckingham Palace and having lots of rests inbetween so feet rather tired and slightly swollen so must go to bed to prepare myself for tomorrow’s social activities of lunch at Gun Wharf Quays and chinese meal with old work colleagues in the evening!!!
Hi kate,
You have been busy.
Have a nice day today and we will sort something out to meet up at Westminster.
Lets hope some more attend, it will be nice to put faces to names.
I will take a look at the www.bcpals.org site.
I am having my next taxotere at 11.30 so think of me then.
Take care
Fay :o)
I’m seriously considering going to London - just have to see how I can fix child-care around it.
Jenny
xx
Jenny- lets hope you can make it. It will good to meet up. Have you met Kate before?
Kate- I am just signing up to the www.bcpals.org.uk site, I hope to catch up with you then. Had number 5 taxotere yesterday so feeling a bit lethargic. I will be more chatty in a few days.
Hope to catch up soon
Fay :o)