Technically it will mean different things dependent on which part of the country you are in but the thought of maybe going into lockdown or shielding when the nights are drawing in, fills me with horror and dread. I wonder when anything remotely feeling like normal will happen again. I really feel for all of those living in the north as us southerners are probably going to be slower facing restrictions. How is it affecting others?
Hi @Franko, I think with the shutdown in March I felt there was a plan for shielding of the very vulnerable for 13 weeks and then life would go back to normal.
My emotions have been all over the place, I got elated when I got an on line grocery slot and burst into tears at the least frustration or film.
But I kept in contact with family and friends, whether they contacted me or not, I got to grips with zoom, skype, what’s up, even wrote a couple of letters and the phone bill went up.
Now I really think I have Covid fatigue, not just CLL fatigue, and less news to impart when I contact people.
Now I do not feel there is a plan or an end in sight, I hate being out of control and not knowing.
Where did the summer go, where did 2020 go, thank goodness I can rant on here !!!
Yes it’s exactly that @Erica. Complete fatigue with the whole thing with no end in sight. Non stop mask wearing and control measures plus all of the depressing news every day. I came to terms with the cancer a long time ago and made plans. But I can’t make plans now and none of it is in my control which I hate.
I’m not sure what to think or feel anymore…I was so happy to return to work for the nhs in aug after shielding for 4mths…now it’s looking like I could be shielding again in next few months ahead…I live in lincolnshire so think I am pretty lucky but for how long? It’s so depressing now…
Yes @Emmaco, it is depressing, I sort of feel neglected and I want clear guidance of what is the right thing for the extremely vulnerable. Thank goodness we have this forum to be able to support each other on.
Me again @Emmaco if you would like to talk you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at firstname.lastname@example.org, I am now feeling quite tearful about it all.
Yes I agree with you there. It seems like we’ve been forgotten about.
Oh no dont be tearful…bless you…but thank you I will bear that in mind.
Hope you’re okay Erica, so understandable you’re feeling tearful, I can only imagine how frustrating the lack of guidance must be and how difficult these uncertain times are. Hopefully there will be some clearer guidance later today and Blood Cancer UK will of course update our information to reflect any government updates.
Take care, Alice
So here it is. About as clear as normal and really not much help
Thanks @Franko, we await who gets letters and who doesn’t.
I’m just in shock about this lack of compassion to people like us.
I understand how people feel as it is difficult when no end in sight. I live in Bury in Greater Manchester and we have high Covid rates and of course arguments with the government as they want places to shut down but will only pay two thirds of salaries. Really hard if you are on the minimum wage. All I can say is do follow the strict hygiene principles, try to get out. I went for a walk with a friend today, we both wore masks but an hour’s walk in the fresh air really bucks me up. Try to do something positive each day and maybe best not to look ahead too much.
You sound like your approach is really healthy @Joan. Little things I guess to make life slightly better. It must be awful living in the middle of a political battleground. I’m not sure whether it would be better to go to tier 3. We in London just moved to tier 2 yesterday. That’s prompted myself and a friend to meet up in the park which is about all we can do now.
Hi everyone, we hope you’re all doing okay in the light of the government announcement last week? For anyone who might not have seen already, we just wanted to share this with you all: https://bloodcancer.org.uk/news/what-does-three-tier-system-mean-people-shielding-england/ it’s a blog written by our Research Comms Manager Rachel. It talks through the new three-tier system and what it can mean in the context of being affected by blood cancer. Please feel free to have a read, and of course, we’re always here if anyone has any questions or needs any support.
Oh, @Joan, It must be like politics has taken over and peoples lives, finances and livelihoods are forgotten.
It sounds as if you have the right philosophy with your hygiene principles and walks in the fresh air. I go for my daily walks with my walkman playing all my favourite music. I usually do the same route every day but being surrounded by nature and/or properties there is always something different to see.
I am definitely trying to keep it in the day but I am starting to hear the word Christmas coming in. Take care of yourself.
I’ve never stopped shielding since I was diagnosed in November 2014 with Myelodisplasia.
My time is limited and Covid is another threat.
I’ve just had my 76th cycle of chemotherapy which leaves me shattered.
Thankfully its still effective, but I’m living between pre chemo blood tests.
I find this a terrible strain.
I do get a lot of support from Pilgrims Hospice for which I’m very grateful. With their help I got Attendance Allowance which also doubled my housing benefit so at least I don’t have to worry about finances.
Living alone is hard too.
But I don’t give up, ever.
Good luck and best wishes
I can’t imagine how that feels @Blackhat. It sounds hellish. My situation sounds really easy compared to yours. I’ve at least got enough confidence that it’s safe to go out during remission as long as I’m careful. So far I’ve been justified in my belief but with the virus situation getting worse again the next few months are going to be hard for us all. Take care.
Hi @Blackhat, gosh you are up to your 76th cycle of chemo now, it has been a long old haul.
As you say the terrible strain of being before, during or between blood tests never goes away.
Pilgrims Hospice have definitely stepped up to the mark and must have made such difference financially for you.
Living alone must be tough but you know this forum and the support line are always here for you.
Look after yourself and stay safe.
Been doing a task I’ve been putting off for some time.
Arranging my funeral, sounds grim, but it really wasn’t any hassle.
Let’s hope I don’t have to use it for a good while🤞
I’ve found what will suit very well. My eldest daughter who I’m close to is my next of kin and I don’t want her to go through the ordeal of arranging it all.
She works and has 2 severely autistic children to cope with, plus her estranged abusive husband was murdered 4 years ago. Poor girl she’s got an awful life.