Hi all
Hope you are all ok? You are all very quiet at the mo. Am bringing this back upto the top as wondered whether you would like to have another “liver birds” meet - or is it just me?!! Have also just started a new thread about a SE meet given the problems with the Cinderella Day.
I’m ok - more mobile every day. Had a lovely weekend - dinner with some friends on Saturday and then we all went up to Cambridge yesterday to have lunch with Catherine (my youngest) for Mothering Sunday. Probably would have been easier to have got her to come to us but Cambridge was lovely in the spring sunshine - lots of spring flowers out in the gardens.
Have also just booked a cruise for the beginning of April - Canary Islands, Madeira and Morocco. So am very excited about that.
How did you get on on Friday, Pinkdove?
Lots of love
Kay xx
Hi Kay
Bet you can’t wait for the cruise! And really pleased to hear that you’re more mobile every day.
The scan confirmed that it’s active again in my spine but in different places (neck and lower spine) so going to Addenbrookes for the next 5 days to have them zapped. They’ve taken me off Xeloda during this time and given me steroids to combat inflammation.
It’s a bit of a bummer really because I’d arrange a meeting to see one of our local GPs re an idea I have re secondaries - tried to delay my radiotherapy but no dice!
Would you think of coming to the East Anglian meet if nothing transpires with the Liver meet? Would love to go to a Liver meet - especially if it was in Liverpool, my home town!!
Love Carol
xx
Hi kay and Pinkdove
We have all been a bit quiet. For me its because I had relatives descending which has been a bit difficult, they want to see me , but I feel a pressure to keep up appearances with them. Its hard, but now we have some peace and quiet.
Pinkdove…sorry to hear you are going for rads…what was your idea on secondaries? Can I be nosey ? I feel so strongly that we are so much swept under the carpet as its all just a bit difficult for evryone…
Kay - glad to hear you are gettting about, the cruise sounds fantastic, sunny, marvellous…woul love to go on a cruise myself but OH not keen, and son would probably jump overboard…but we are going to barcelona first week of April so really looking forward tot hat, I think I should be Ok for that.
Allie, Dawn Jackie, tracey, Hope you are all doing OK and anyone elese here…check in.
Just to get ball rolling how does anyone feel about these dates:
April 17, 18
April 24,25
love
to all
Cathy
Hi all,
Sorry I’ve been quiet been busy moving the units and with orders which is nice. Don’t know if you’ve read my other thread but my onc nurse rang on Friday to tell me I had a clot in my portal vein that was picked up on my latest scan, had to wait til this morning to see onc, so spent all weekend worrying. Anyway, saw onc put on Clexane injection which I have to give myself daily! I knew my nursing skills would be useful. I also mentioned to her that I’ve been having odd tingles just below my bra strap on the left hand side and she seemed to think it might be something my bones ?spine but won’t do anything about it at the mo but continue to keep an eye on me. But liver is doing really well, its very bobbly which means its regenerating nicely.
I would still like to meet up with the Liver birds, those days in April are fine its my b’day on the 15th April. Pinkdove if you are going I live in Conwy and can get to Crewe to meet up with your train if you like.
We’ve booked a week in June to Tuscany, we are hoping to share a villa with friends if they can get organised!
OH has gone to Carmarthen for work tonight so I’m looking forward to cauli cheese, OH doesn’t eat cheese!
Right off to start tea.
Allie
hi , dates all fine with me .well its lovely to see you booking up hols makes me feel more positive and happier . i must get down to thinking about a holiday as we have a big motor home that has had no use .
well i had to go to one of the other islands on friday to get a port fitted as we have no one to do them here . i was scared of the anacetic (spelled wrong) so i got all in a fluster and asked to have it without , they said they would give me a litle sedative and see how it went down in theatre , but all was ok and i didnt need one , i could hear and feel a little but nothing to worry about , now am all bruised and it is itchy .
well better go cook tea , bye for now .
love Tracyxxxx
Hi All
Finally got my Trial info through today, last scans in January showed progression in my Liver so had my last Herceptin on 3rd Feb and been off treatment since in order to enter trial you have to be off treatment for 5 wks (scary)
the chemo is called ERIBULIN and is phase 3 its due for release in 2010 it has shown promise in other cancers so they tryed it on 100 Breast cancer ladies for phase 1+2.
It is an IV drip for 5 minutes on Day 1 and day 8 then two wks off.
im hoping this is as easy for me as Xelodai was .
Apparentley there are 59 hospitals participating in this in the uk so if anyone else is entering it i would love to hear from you i am in Leicester.
Love to you all.
Tracey xx
Hi All,
Would love to meet up again, and meet all the new faces too. The Thursdays would probably be better for me, but I could probably wangle a friday if it came to it. What about the 17th? The sooner the better. Can people make that day? Will you be back by then Dawn?
It sounds like you’re all busy booking up your hols. I’m envious that you know what you want to do. I’ve been looking at various things but it always seems to be the wrong time of year to go to the places I want to visit. I just can’t decide and OH is no use. He wants it to be my choice (which is sweet, but doesn’t help when I’m procrastinating) We’re planning to go in June, after the exam stress (we’re having a double dose in our house!)
Dawn, what’s this about taking your BP and temp? They’ve never done mine. Just ask me if i feel well and no shortness of breath and I’m away…
Kay, sorry you’re so fed up stuck at home. I would be too. Have you got anywhere with selling your junk yet? Your cruise sounds heavenly.
Pinkdove so sorry to hear about your spread. At least they seem to be getting on with it quite quickly for you. Hope all goes well.
Can you tell us a bit about the focus group pls? or is it on another thread?
Cathy, glad your rels have left you in peace. It can be hard dealing with everyone else’s emotional needs can’t it? Sometimes it’s just too much to deal with as well as all that you’re carrying.
Allie - glad to hear your liver’s doing well. Hope your injections zap that clot into extinction. How long do you have to have them?
Tracy - well done for getting your port over and done with, and no anaesthetic! Really glad it went ok for you.
Tracey - your trial sounds promising, altho i don’t like the sound of having to have a needle just for a poxy 5 minutes infusion!! It doesn’t sound too arduous though, 2 weks on, 2 weeks off. Hope you feel well.
Well, need to go. lots of threads to catch up on then need a sit down in front of the telly. Got a small bit of banoffee pie my Son made yesterday (Mothers Day treat altho I’m not sposed to eat wheat or sugar and its his fave pudding!!)
lots of love to you all
Jacquie xx
Hi Jacquie, Cathie and Allie
Hi Jacquie - Thanks for your words about my spine - I’m hoping that it’ll settle things down again like it did 3.5 years ago. I’ve got fantastic support (which I’m really lucky to have I know) plus the Matron of the cancer ward is a close friend of mine and she’s brilliant.
BCC had a small focus group on secondaries and employment and there were 5 of us who went and I think BCC got a lot of information from us to take forward. I’m not aware that we’ve started a new thread - have you Kay? It was really telling our stories which was good because there were 3 of us who still worked and 2 who don’t and the reasons why and I think it also shows that we can’t be put into the same little boxes as we’re all different with varying degrees of the disease.
My son came home specially yesterday for Mother’s Day (he’s at Leeds uni) and that meant a huge amount to me - I think he worries but he never says anything (unfortunately living with it since he was around 6 is a long time).
Hi Cathie - I’ve been banging on for ages that patients need to be aware of the possibilities of secondaries and getting nowhere with the breast care nurses (they are lovely girls and I do see where they’re coming from but it’s still frustrating!) So I’ve decided it’s the health professionals themselves, especially GPs etc so had a meeting set up with a very proactive surgery in our City for tomorrow which has now gone out of the window because I’ve got to have radiotherapy but we’ve re-arranged it for two weeks time to see how we go forward.
Hi Allie - thanks for your kind offer, things are a bit up in the air at the moment as I don’t know how things are going to be but thanks for that. Not sure whether I’ve mentioned to you before but a friend of mine lives in Deganwy.
Take care all of you,
Carol
x
Hi all
I’d also prefer (like Jacqui) either of the Thursdays (17th or 24th) - feeling Dawn has said she can’t do the 17th (correct me if I’m wrong Dawn as I can’t find it written down anywhere!! Herceptin week???), so should we settle on the 24th?
Think Carol has summed up the focus group very well. Was really interesting hearing about other people’s experiences - and some of the differences between working for a big organisation such as I do and what happens in much smaller firms. As I begin to think about returning to work, I feel I could do with more support than I currently have. HR just don’t seem interested - just want me back ASAP and seem to think that that will be it as I will be “better”! Got a meeting with my line manager on Friday, so may learn more then. Really would like a very staggered return - partly because of the physical drain (lots of 3 year olds is hard work!) but also because of the emotional side. Can imagine spending the first few days just “updating” people!! How have you found it’s gone Jacqui? Are you now back to your full hours or still on reduced?
Glad you managed to enjoy Mothering Sunday, Carol - it’s always a bit special when the children make that real extra effort, isn’t it? My son (23) rarely says anything about my illness but clearly worries more than the 2 girls I think (or at least they express their worries and ask questions which makes it easier). He and my eldest took me up to Cambridge on Sunday (with OH) so we could have a family lunch with my youngest daughter who is at uni there. It was really lovely though was quite sore yesterday having sat in the car for so long.
Glad you’ve also managed to rearrange your meeting with the GP, Carol - hope the radiotherapy is doing the trick. And thanks for inviting me to the East ANglia meet - would have definitely come but you’ve probably seen that I’ve posted re a SE meet round Guildford. Had a good response to that, so hopefully we can set a date sometime soon.
Well done Tracy on getting your port done - it will make things so much easier for you.
Hadn’t heard of Eribulin, Tracey, but good to hear that there are these new drugs coming along. And it doesn’t sound too taxing a treatment if it is just 5 mins iv twice a month. Hope that is the case - do you know if there are any particular side effects? Or just all the usual ones?!!
Glad you’ve got the injection sorted, Allie - presumably they are monitoring the clot in the meantime??
Right must go and do some (gentle) tidying up - house looks as if it hasn’t been touched for months!! Probably because it hasn’t really!
Love to all
Kay x
hello All
I had an interview yesteday with BCC about workin with secondaries, the lady on the phone was very nice and very easy to talk to, wish I could have gone to the forum to hear what others have to say.
I tried to get accross just what you are saying - that there is a world of difference between a primary and a secondary diagnosis, one can be dealt with neatly and cleanly and the other is ongoing and uncertain. my employer has been great so far- but will they continue to be? I have no idea, Would like to see very specific references in the policy to it being quite a different thing dealing with secondary.
April 24th looks good to me .
tracy congrats on your port- I have one and i really hardly notice it, so its good to have and you do hear so many stories about bad veins.
jacquie - hope you enjoyed pie, had the courage to weigh myself and found I put on 4 poundds- not as bad as I thought!! off to buy chocolate browinie in an hour or so to celebrate.
Carol - let ius know how you get on, I am interested in your project, I knoew whwre you are coming from on this,I really do,
love
Cathy
Hi Cathy and Kay
Cathy - Am meeting with the GP in a couple of weeks by which time hopefully the radiotherapy will have settled down. The one to my neck is going to be the one with the most side effects and they’ve booked me in for that next Monday.
Addenbrookes is only 30 miles away from us but the A14 is awful so you always need to leave about 1.5 hr to make sure you don’t get into any queues - just what you need!
All in all it took 4 hours today - mostly waiting around but at least that bits done (CT scan, marking up, seeing onc etc).
Kay - glad you’ve got something going in Guildford - isn’t it weird that this has all taken off which is really good news as we get to meet each other rather than just being ‘cyber’ people!
Cambridge is a lovely place isn’t it - a friend of mine (Tess, who was at the focus group) is taking me to Addenbrookes on Friday so we might hit Cambridge as well depending on how I feel. My son is 21 this year and sounds similar to yours! I know he worries about me but he hides it well.
Take care all of you
Carol
x
Hi all
Hope the radiotherapy is going well, Carol - and enjoy tomorrow with Tess. Hope you feel up to making a really good day of it, despite the hospital! And glad you’ve got the GP appointment sorted as well - sounds an interesting and useful thing to be doing. Let me know how you get on.
I did really find the forum interesting, Cathy, so will try to go to another if possible (assuming it’s relevant!). It was so good to hear other people’s views and to learn from that - I had certainly never really thought about the difference between different size work places etc. And it certainly helped me to focus on what I need to say to my boss/HR when I meet with them!
Have put the 24th April down as a definite in my diary now - is that right??? And are we meeting in the same place as last time - seemed convenient for all and they didn’t seem over-worried about us being there for hours! Hoping to have out first SE meet some time the week before in Guildford - and then possibly the Cinderella Day on May 6th!
Hope everyone is doing ok - are your injections doing the trick, Allie? Or is it too early to say?
Love to all
Kay x
Hi Kay
I am putting 24 april in my diary right now,
tracey- I just answered you on the other thread and completely forgot to put this on, I am going to go back and PM you.
i think the previous place was quite good really when you compare it to the attitude of the Ritz! We can eat what we want,stay as long as we want and it is fairly central,…so I am happy with that.
I am off to 6 th Tax tomorrow, getting a little stressed as it will then be time for a scan,I think I quite like the security of knowing what the plan is, when this is finished back to uncertainty again.
Kay I know what you mean about talking to your employer, remember your rights, I have great book from cancer bacup which is helpful.
Hope everyone else is OK
love
Cathy
Hi All
Are you saying you are meeting APRIL 24 - I can do that day as will have been home for a week. It is a Monday right? Let me know if this is the case and will make sure am around for it.
Take care
Love
Dawn
xx
think its a thursday dawn. ) x
Hi
Me again.
Well if you are talking Thursday (which it is - my calculations above well out), and the 24 April, I can certainly do that. You were all talking March before, I thought, or maybe I am just completely doolaly. I land back in UK on 13th April, and not sure what up to that week apart from Herceptin on 15th, so keep me informed of the South East Meet, but am definitely up for 24, so will tell OH to make sure that is one of his days off!!!
Speak soon
Love
Dawn
x
Just a quick post to “sing”…
Happy Birthday to you
Happy Birthday to you
Happy Birthday dear Dawn
Happy Birthday to you
Have a fantastic weekend!
Lots of love Kay xx
Hi Dawn
Have a great day
Happy Birthday to you !
Have agreat day with your family.
love
cathy
HAPPY BIRTHDAY DAWN
Have a lovely weekend at the hotel!
Take care
Allie
Dawn
Happy Birthday to you
Squashed tomatoes and stew
Bread and Butter in the gutter
Happy Birthday to you!!!
PMSL!! Sorry! Just couldnt resist!!
Seriously, hope that you are having a brilliant time!!!
Love and Best Wishes
Anne xx