This is beautiful. You guys are just so well spoken and add calmness to my ever crazy mind! I thank you so much!!!
2 Likes
I have to go in and check or get alerts through email. Be good to hear how others get alerts?
1 Like
Hi @Clovy14, my husband goes round with his head in the sand and won’t discuss my CLL and definitely not feelings, that is just how he is, I don’t think I will change him now.
I have also found some people who will say it will be fine, you will be OK or the one that really gets to me is ‘oh, you do look well’ when I feel really yukky emotionally and physically inside. I think it makes them feel better.
That is why I need people that I know will understand my crazy thoughts on our forum.
@Nichola75, I have to come in to this site to see posts or I get alerts in my emails too.
2 Likes
I must say - my husbands pretty good. He doesn’t talk about it much at all, but he did attend a counselling session with me which really made me understand a little more about how he copes with it all and how he feels. He is also really good at calming me down when I’m in panic mode!
I think people feel that they are saying the right thing @Erica. Being anything other than positive - however unrealistic that is - would be difficult for them. However, it is sometimes the conversations we need to help us.
2 Likes
@Clovy14 and @Nichola75 just to answer your questions around alerts to conversations - it may have something to do with your preferences towards the end of the page. Scroll down to just below Add comment and you’ll see a drop down list saying Muted/Normal/Tracking/Watching. Hope that helps!
Hope you’re feeling okay @Clovy14!
1 Like
Yes thanks! That did help lol… I always see a bunch of replies and they are always days old … trying to keep on track! I look forward to reading these. I (technically) feel ok- other than anxiety.
1 Like
Ya I get it. People ARE trying to be nice and I get it. I just know people DO get shitty diagnosis everyday so just because I’m a friend or to them it seems unlikely due to age etc- it DOES happen. It’s all very frustrating. Hard to go thru in ones own head.
2 Likes
Glad that helped! It can be quite tricky to get your head around forums at first I always think. There’s never any rush or pressure at all to respond though!! 
Really glad you’re feeling ok.
2 Likes
Great! Changed preferences x
3 Likes
So bloodwork tho week (1st 6 month follow up from diagnosis) was good. Levels are lower- so I’m glad for at least next 6 months. My brain is always in a 1/2 full space so I’m taking it with a grain of salt. Sick of thinking about it actually. But can’t stop.
2 Likes
Hi @Clovy14. That’s good news about your blood. It as exhausting thinking about things as trying not too think. 
I hope you are looking after yourself? X
1 Like
Thanks Nichola - very busy with work (school closed AGAIN so I’m teaching from home 
) and the kids keep me busy! Hoping you as well are taking care of yourself and enjoying the holidays!
1 Like
A few classes closed in my school - I think it’s hard teaching from home! Looking forward to school breaking up. Then I’ll look forward to the run up to Christmas 
2 Likes
Hi @Clovy14, I was really struck by your last two sentences, so true.
Why can’t we just be satisfied when we get good news and sit with that.
You and @Nichola75 are doing brilliantly adapting to the ups and downs of being in a school and then working from home, what a year it has been, who could have foreseen this years events.
Take care and we will all be supporting each other over the holiday season and beyond on this forum.
2 Likes
Hi @Clovy14. I’m assuming you have hit the Christmas holidays? How are things?
1 Like
Thank you- I moved my daughter (7) to catholic school here in nyc since they are open 5 days (luckily haven’t been closed due to Covid yet) so at least she is settled. I have a 3 year old at home so when city schools close- where I teach- it’s a bit of a challenge but I gotta do whatever I gotta do! No choice!
1 Like
Omg have NOT hit Xmas holidays yet! Last day is tomorrow- so I get Xmas eve off till New Years and I need this break so badly! How is it on your end!?!?! I can’t wait to turn off my computer for a week I can tell you that! I’m not a fan of Xmas anyway- I always find it sad- but gotta keep spirits up for my kids! Ps: yes I teach English language arts snd know “gotta” isn’t a real word lol but I’m tired 
. Happy holidays to all!
1 Like
Btw: still don’t see when you guys post/respond and I changed preferences so I’m sorry always so late!
1 Like
I wonder if @Alice_BloodCancerUK or @SuBloodcancerUK could help?
1 Like
Good morning @Clovy14 . I’m glad the children are settled and have managed your oldest daughter has managed to stay at school. I’ve found it challenging when both myself and my daughters have to teach/learn from home. However, mine are older so are able to be a little more independent. I can imagine with a 7 year old and a 3 year old it would be so much more difficult. Fingers crossed the schools remain safe for you and COVID free! Children are great at keeping your spirits up at Christmas time! Is it holiday you’ve just never been a fan off?
I’m ok - I’m tier 4 now so will be working from home until the 18th January at least! Knowing a date has stopped the anxiety of worrying so I feel I can relax and enjoy the break much more. My daughters are very very excited (11 and 15) My husband has taken a test as a precaution as been on public transport a lot this week and with the new strain being so much more infectious, he us being extra cautious! I’m hoping that’s ok otherwise it will really impact the girls and their celebrations!
1 Like