Hi everyone I have just received an e mail to confirm I am at high risk of getting very ill if I contract Coronavirus.
Very sad 😔to see it in black and white but necessary.
On the bright side it is good to know the system is working for us😊.
There is direct advice on how to protect yourself in a link.
If you haven’t had notification yet I am sure it won’t be far off.
Stay safe and stay strong.
Ann
I’m expecting mine tomorrow Ann. I know it’s the reality but it won’t make it any easier seeing it formally 😟
Edit: just received it
Stay safe,
Newdawn
No Newdawn, it did not make me feel good at first. However, it is very informative and precise, which helps us stay safe, so beginning to appreciate it now.
Stay safe.
Ann
I'm not in UK but have received no such notification in Canada. Is there any way you could share the link with the direct advice - even though it may not all apply to those in a different country?
Nanaimo, where I live, has 14 ventilators. And the doctor who is head of ICU here has done the math for a national newspaper (Globe and Mail) and said by conservative estimate of covid-19 spread, we can expect to reach a point where 900 ventilators are needed in Nanaimo. The article, as well as our provincial public health officer, discussed in some detail the protocol that is in place - and has ALWAYS been in place - to decide who to save and who to essentially murder, since what they would be doing is removing the ventilator from my face to give to a younger person with dependents and no chronic illness. The protocol is already in place to execute a form of 21st century eugenics. And our newspapers are starting to report on it. At least in Canada. And I - and probably most CLL patients - are on the chopping block, should we need ventilators.
So bottom line (and this is not scare-mongering but reality as communicated by our BC medical and government officials recently): our medical system locally and in British Columbia has already done the calculus and predetermined that I will be allowed to die (will be murdered, I would say), should I get this and need a ventilator. And I probably would need a ventilator as an immune compromised person.
It's very grim. But my take-away is that my only hope is to do everything I can to keep myself alive, because the hospital and medical system will not be there to save me if I contract this and if I cannot recover at home. So I am very hesitant to even go to the lab for my blood work, since that lab is also testing all the covid-19 people... or go in to the local cancer clinic in the hospital for my april 6th appointment or my april 8th 4.5 hour rituximab infusion. I feel, with my current self-isolation, the hospital and lab are the most likely points of transmission for me, yet hospital will not then turn around and keep me alive, should they transmit it to me.
Kim, Adrian posted the content of his notification earlier on this link;
healthunlocked.com/cllsuppo...
Newdawn
Thank you! 
I just downloaded it. It was very helpful. We have received no such guidance in Canada or BC.
After that man with CLL died from Covid-19 last week, I am afraid for my husband’s life. We live in Canada too—in a rural area with very few resources and almost no ventilators (5?). Why hasn’t CancerCare gotten on notification of CLL patients? I just don’t understand...
I agree. It's very disturbing to me too. Canada is not acting nearly as swiftly as UK and many other countries. And is certainly doing nothing whatsoever to send notifications to the most vulnerable and at-risk patients in the way NHS has in UK. I have received no communication whatsoever from BC Cancer Agency or Nanaimo Cancer Clinic or any dept of the health service. And when I called and said I didn't want to go in for an appointment, they basically said it's business as usual. I am still goign to push for my next check-up to be done via phone. I think it's up to each of us to look after our own lives and set our own boundaries to keep safe. I don't sense that the health care system is goign to take care of us - at least not in Canada.
Hi sorry I don’t know how to share the link. I will ask for help from my son in law over the phone tonight, he is currently working from home, so don’t want to disturb him.
Essentially we have to stay indoors no walks like other groups. It is not too clear on the garden. We are told to stay indoors with windows open for fresh air. A lot of the hygiene techniques are what we already practice as CLL’s, separate towels, bathrooms, bedrooms where possible. Washing hands for 20 seconds regularly. Washing door handles and knobs regularly touched. Hope this helps while I try to send the link?
Stay safe.
Ann
Thanks Ann. Newdawn shared the link...or rather the link to Adrian's post where he shared the link to the notification.
I just received mine too Anne, preceded by a call from my GP.
Knew it was coming but it really rams it home seeing it in black and white, and specifically for me.
Stay well.
Not received any notification yet Anne. I am guessing that it might be due to living in Scotland.
A bit worried about home delivery as Sainsbury's web site does not identify me as vulnerable and can't get through on helpline. Running out of fresh food and although hubby has been going to shops can't get what we need. We are also shopping for his 95year old mother.
I can feel my anxiety levels rising. 😷
Hi Elizabeth I am sure your e mail will be on its way.
Once you have it you can show it to Sainsbury’s and get priority shopping.
It is all very anxiety provoking but as Adrian said we do have some immunity.
As long as we follow the rules and try our best not to get it we should be ok.
The e mail does not suggest we are at greater risk of getting it. It suggests if we do get it we are at risk of becoming very unwell.
There is a lot of uncertainty out there but not for us now, we must stay indoors.
I am trying to keep myself very busy to distract and prevent any negative thinking creeping in.
Distraction is a good prevention strategy for me. If I do get anxious I challenge my negative thoughts and replace with more positive thinking. I use relaxation and meditation techniques. I also find keeping myself living in the moment and not dwelling on past, future or any what if’s, formally mindfulness, works for me.
I am sure you will have favourites of your own.
Take care and stay safe
Ann
Just had mine by text 😕
I also have received my NHS notification but sainsburys also does not identify me as extremely vulnerable, even though I have been having deliveries from them 6 years. They also have not identified my 85 year old mother with dementia as vulnerable. I have now gone to a local volunteer organisation as I have not been able to get any deliveries for my self (I live on my own) or my mother (who also lives on her own). When I rang sainsburys on Friday they claimed they were being informed by the government, but the email they sent customers said that they were getting their list from vulnerable customers contacting a vulnerable helpline previously? I have never heard of or been informed of such a helpline, not even when I was having chemotherapy, lived on my own, could only walk with a walking frame and was recovering from back surgery.
I’m puzzled and dumbfounded by this fapumpkin, why on earth won’t Sainsbury’s accept your notification? What more could they possibly want?
Surely the Govt can’t send any supermarket lists of vulnerable people. It would breach the Data Protection Act.
Newdawn
Newdawn-
You may have covered this somewhere else, but there are now a lot of posts re Covid 19. I am on W & W (never treated) but I received a text from NHS Coronavirus Service yesterday saying I had been identified at risk of serious illness etc etc. I am pretty worried about my wife going out shopping so I registered today at gov.uk/coronavirus-extremely-vulnerable. Given I have never been treated, was this the correct thing to do, given that untreated CLL seems to fall outside the list of illnesses set out in the course of the registration process? Also, I answered "don;t know" to a question whether I had received a specified letter, as I had received a text, rather than letter. Should I have answered "yes"? (I think a less important question)
Would be grateful for any guidance you can give on this point.
Antony
Antony, the notification text is the letter and you are firmly in the at risk group who need to isolate for 12 weeks with all the rights that confers. I only received a text and I’m receiving treatment.
The status of your condition has been assessed clinically hence you being included on the list by your GP/specialist.
Yes should be your answer to that question. Hope that helps.
Newdawn
I have had my shopping delivered for over 20 years and like you have never heard of a vulnerable customers helpline. I have tried to call them on the number listed on their homepage and also on the number Adrian posted but engaged all day.
I am unsure about how this will get sorted out.
I rang Sainsburys numerous times-eventually got through to an automated message saying they were prioritising the elderly and vulnerable, then it cut me off. I have emailed my mp about the Sainsburys issue and joined Twitter.
Hi Farpumpkin
All the major Supermarkets are struggling. I managed to get a slot today for tomorrow. Spent 3/4 hours in the end because sainsburys system wouldn't accept payment. I am/was so cross as my slot has now expired. I've given up until the overstockers are overstocked, and relying on bits brought in by family.
The Tesco corner across from me is still so busy here today. I could almost write a book, the lorries come in and all these cars & people arrive. Crazy.
I am just so sorry for you, and it is a struggle.
Take care & best wishes.
Sue
Yep. Received a text message with the link which I had already founds thanks to this forum. I have CLL with active disease since last August after chemo two years ago.
Also had a call from RM hospital saying I have not to go there for a blood test. My appointment was next week. I will receive a phone call from my clinician as per my appointment time. Without blood results I can't see any value in such a call.
Thankfully I got my practice nurse to give me an appointment at local surgery for blood test.
I will then email results to RM
Stay safe everyone.
Got mine too Anne, brings it home a bit. With the PMs latest announcement I suppose we're all in the same boat, God bless, Terry
Reading this thread I am curious. Does anybody know what the process is for delivering the message and who drives it?
As there seem to be different ways of delivery and different modes I am tempted to guess it is locally (GP?) driven.
stay safe, best to all, rob
In the build up to delivery it was said gp's and specialists would identify those at risk. But the text itself states NHS coronavirus service and came from a different number to the texts from my local gp.
Hi it just identifies message as an NHS message could be GP, Specialist or both.
Stay safe
Ann
I haven't received mine.
Can I ask a question of those of you who've received your notification?
Are any of you on watch & wait, or are you being treated / have been treated in the past?
Essentially, I'm trying to work out if the NHS is distinguishing between those of us on W&W and those of us requiring treatment.
(and for those of you who know I'm working in Egypt, I'm still an NHS patient back home in the UK).
I received mine last evening by text. I'm W&W and never been treated.
That answers that, thank you.
Unfortunately my UK sim card doesn't work in Cairo, so I won't get the text. I may need to wait until my wife gets the letter back home in Staffordshire.
In the guidance it states
'people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment'
I am back on watch and wait having completed FCR treatment in late 2018.
Have managed to get my UK sim card working, and no text or call from the NHS generally or Addenbrookes specifically. Let's see if I get the letter....
Hello Vakraas, I’ve not received anything from Addenbrookes either but would imagine they’re really under the cosh at the moment. I’m due there on 14/4 to have bloods and provided all is ok get a repeat for Venetoclax etc. I’m sure as the date creeps closer a cunning plan will be revealed, well I hope so anyway!!
Best
Shooey
Well, that's a relief of sorts. I did speak to appointments at Addenbrookes on the phone yesterday, and I know that they're desperately scrambling to get the high-priority patients who need to be seen in person through the doors this week, and after that all bets are off. Given that I'm a W&W patient who isn't due to see them until June, they spent far more time talking to me than they needed to, but it was nice of them to make the effort.
I've tried to get through to the haematology nurses via phone and e-mail, without much luck; but, as you note, I imagine they're really busy right now.
If I do get a letter it would be really helpful in convincing my Cairo employers that I need to be on home leave right now rather than coming in to the office.
Glad you got through, you obviously didn’t speak to Eva Braun, my favourite (not)!!
I would hope that your Cairo employers would by sympathetic with or without a letter?
I’m reluctant to pester them at the moment but if i’ve heard nothing in a couple of weeks I’ll message via Mychart.
Stay safe
Best wishes
Shooey
Hi I am in treatment with Ibrutinib in Flair trial at home in the UK.
Stay safe
Ann
I am on the Ibrutinib/rituximab arm of the Flair trial for 4 years, and receive PIP because of severe osteoporosis and compressed fractured vertebrae.
I got mine yesterday.
Going to be a nuisance because it means I can't keep walking & I'll be a beachball by the time this is all over. Never been very good at exercising indoors.
Still keep safe everyone, this virus is going to cause some damage before its done.
Thank you to all who replied to this post. Too many to contact individually. 👍Stay safe.Ann🙏
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