AWAKE.........

Oh , what happened? I thought you were doing well on the Chemo they started you on? Did I miss something? Not sure which hospital you are at, but have you tried contacting any of the top Cancer hospitals to see if they have any trials/options left for you? 
How you feeling physically? I’m sure mentally you are all over the place! I hope the hospice is giving you as much support as you need and I hope you are able to make some more memories with your family, although sadly Covid/lockdown has king of put pay to that!! 

I really don’t know what else to say! This week just seems to be full of sad news! These are the times when we realise how truly delicate life is and that none of us know what lies around the corner! 
What I do know, is that you are a very Special Lady who has done everything within her power to prevent this disease from taking your life away from you! You dig deep my friend, live every day to the full, each day is another day that we get to support and love you, another day where you can truly show us how strong and determined you are! Who knows what treatment might come along! If you have the strength you keep going Hun, lean on us as much as you want and always remember we are here for you! I for one am proud to call you my friend! 
Right now I just want to hold you tight and remind you of how Special you are! Let’s hope we can keep you smiling and laughing as much as we can over the coming days, weeks, months! Just do your best Hun, that’s all you can do! 

So sorry your news has been so rubbish Hun! Life is just so cruel sometimes! Love you and always here for you Hun. Sal xxx

After the last couple of days and ’s news, I’m not sure what to put to say hello to December, But......

seems appropriate! I think the coming weeks are going to be tough for everyone! But together we can help each other through it! Cazzy would want us to carry on making each other smile and Laugh! 
Let’s try and make December a month to remember! Let’s do it for the friends we lost this year! They’ll be watching from above and we can’t let them down! The AWAKE thread MUST go on! 

Hoping you are all fast asleep! I hope to be heading off to sleep very very soon! Goodnight Fruit Loops, God Bless the Fruit Loop Angels! Xxxx

Totally agree with you seaspirit44 - totally agree.  I suppose that would be too simple 

Good morning....

Northerner.....hope the antibiotics have started to work. I think by your absence you are feeling quite rough. Take care.

@ puzzler.....this one's for you..... I've put the pot on ready for you to join me. I would be very happy to phone you on your quiet days if you could get a phone number to me through the Private messaging. All you have to do is answer the request I am sending you. The message will then will then appear in the top right hand corner. On my screen it's  a V shape.

moomy....you have every right to be proud of your daughter. I am assuming I listened to the correct video as unfortunately it's  not labelled ' Moomy's daughter ' and there were several on the page that came up.

LondonLass Noones going to stop this thread and it will get moved to a better place. There is obviously a lot of sorting to be done but sometimes changes just might work. I think a few headings need to be coloured so they stand out, and definitely some sorting of content but I would like someone who has never been on this site before to take a look and see what they think.......they're the best people to trial anything. People newly diagnosed with BC preferably who are panicked and worried...........  And then  raised an important point.. ..not everyone has the latest Iphone or has had lessons in the latest tech.....finding our way around must be simple. It seemed so obvious.....Awake..a chat and support thread....where? In the chat and support section....but maybe admin didn't finish yesterday reorganising. Be prepared for more detective work today!

Ok. I'm off now. I'll pop back later. In the meantime I shall post my thoughts to Ellen.....

Love Karen

Morning Karen (Lacomtekp) I think you are missing my point. I know the AWAKE thread will be moved to a better group, eventually! However that’s not my concern! My concern is that segregating things the way they have takes away the friendly and cosy feeling that the site used to have! It is becoming more and more like an information hub, rather than a place where you can come to find people who understand you and want to help you! 
In the previous style you would have the list of the last 10 or so posts! So there might be one from a newbie, 5 on the usual ongoing threads and a couple of people asking specific questions! On logging in we would see that list and possibly see a thread title that catches our eye and that we feel we can help with, before going to the thread we actually came on to use!

However now I would log in, go to Archive or Chat if it moves and just go on the AWAKE thread and possibly another chat thread. I’m not going to go into the newbie section and the question section because I have no reason too! Now I know you can say, it would only take a few minutes to check and see what’s in the other groups and write replies, but how many people will actually do that? How many people will reply compared to how many that would of if they had seen a new post in the original list of threads!

Thats all I’m saying! I personally feel it’s being turned into a system that is cold and structured, instead of the more cosy and supportive site that it used to be! Which I think is a shame! xx

And I totally disagree so we will have to beg to differ .....

How did you know before what a new person was asking.....?.....you opened the thread and looked. So what is the difference....click on the section and read the list.......

And when you first started...you had no idea it would be friendly. I certainly didn't.  I was afraid to add anything because the chats felt private and I wasn't well informed enough to contribute for months. The friendliness comes from picking  up the posts. Surely a section for treatments and another for support makes some sense. The Awake thread is invaluable but not necessarily what you need if you need practical help to stop being sick. And surely.....we can give a bit back by spending a few minutes reading in another section? I think it still needs work.....clearer headings etc but I don't think it's impersonal. I think the explanatory sentences are actually more welcoming than what went before. 

The big problem now is to get the screens clearer. Less archive material taking up space on small screens!

Anyway, take care. We'll all continue to support each other whatever format we end with I'm sure......love Karen

Oh my!

What a flurry of posts has greeted me this morning!  I haven’t posted for a few days as been feeling low and overwhelmed with the enormity of things. Treatment day today, but just a single so should be ok.

Sad news about two group members. AP7 so sorry to hear your news. You sound very calm, and I hope you have all the help you need to stay in a calm and peaceful frame of mind, whilst holding out hope that a new treatment will come along very soon.

Moomy, I listed to Carol’s song. (Hope I listened to the right one). Very clever, and lovely voice. It made me smile.

My only experience of the Macmillan site has been in the last few months, and I do think it is a very clunky system, perhaps designed by someone who doesn’t regularly interact on social media, but I have always found the answers to questions, encouragement, support, stuff to make me smile etc., which I have found invaluable.  Yes it is sometimes tricky to get to the right place on the site, but perseverance pays off!

And now a request.  As we are now in December, could someone set up, or could someone explain to me how to set up, a December chemo thread?  This has been a great source of detailed information from people at the same stage in their journey.

 Thanks all,

Have a good day everyone, think it’s going to be clear and sunny here.

Judith

Morning Judith (), sorry you have been feeling a bit low, I hope you start feeling a bit better soon! 
I’m afraid I can’t help with the setting up of the Dec Chemo thread, but I’m sure it will be sorted my someone soon and will appear in one of the sections! 
Until then we’ll keep you company! Good Luck with your treatment today, I shall send a little friend along to keep you company....

I hope he behaves himself! Take care Hun, sending Hugs your way! xxxx

You are correct Karen, when I first started I had no idea it would be ‘friendly’! But I was welcomed with open arms and able to read lots of different posts as soon as I came on the group! 

Now I would be met with what for me feels like a very clinical, structured site! Which is already available from other charities! Macmillan stood out to me because it wasn’t like the others! Sadly now that’s changing! 

But as you said we all have our own views! It would be a boring world if we all thought the same! I just wish Mac would sort out some of the smaller ongoing glitches before they started changing things.....again! 

Hope you have a good day. How did you get on with the Christmas Cake making? Xxx

Daughters video is called ‘Covid Christmas’, bless her, based on the tune ‘Santa Baby’! She’s done a Christmas video each year now for some time, I think it began while she had lymphoma, and has just continued. She’s become known for multi tasking and has been giving her Conservatoire students lectures on how to do films, so much so that her Manchester students have really taken it on board and produced an excellent film. 

I felt that the changes to the group really needed to be minimal as too many sub-groups would be more confusing, and so it has proved. 

Anyway, I hope that the study will be ongoing! 

Thinking of all Fruit Loops and hoping everyone has a better December than the dark miserable November that’s just passed, wishing all who have any treatments and appointments the best possible time.

Hugs xxx