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Feeling adrift….again

I’m sure this will be linked to other covid posts but felt we are entering a new phase.
The UKHSA ( UK Health Security Agency) has just announced that the UK is at the most significant threat since the start of the pandemic and yet people can still do Christmas, parties, night clubs etc. in the meantime the immunocompromised are not being addressed or considered at all. We have been consistently ignored, had to fight for our 3rd vaccine, can’t just get our booster when it’s due, have to wait for a text or a letter from somewhere invisible. Can’t access the antivirals because nobody seems to know how to deliver the care and anyway we’re still waiting to be told, again by a letter from who knows where, to say whether we are eligible. If we end up in hospital we can’t automatically have the desired treatment if we show any antibodies ignoring the fact that our antibodies may not be as good as those who have them who are not immunocompromised.
My Christmas is cancelled so I don’t overwhelm the NHS so it’s available for those who are freely mixing despite all the warnings. Does anyone care about the immunocompromised at all, especially those of us who have to deal with infections all the time without Covid?

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I’m concerned about all the above, particularly as I work with the elderly. I have no words of wisdom but just wanted you to know that you’re not alone. I’m going to be watching news reports of Christmas parties instead of going to them too :frowning:

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I was so pleased to read your message. I’m new to the forum, but I’ve been on watch and wait for some years for Chronic lymphocytic leukaemia (CLL) and I’m on immunity suppressants for haemolytic anaemia. I’m finding it so hard to know what to do or not do with the lack of guidance. When the country opened up it really left us behind, forgotten about, it seems.

I was wondering about what it was ok to do. Do you feel it is safe to go to outside events, where there might be a lot of people, even if they’re wearing masks, for example?

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Hello @MaddyH I believe that given a lack of guidance currently we have to make our own choices around what we feel comfortable doing with the knowledge we have gained through the last 21 months. It seems that, currently, there is a reliance on boosters and sensible behaviours. I still await the results of the Birmingham study on our 3rd dose and we still have to negotiate getting our booster dose, mine is due at the beginning of January. We also need a clear path to accessing the antivirals if we, unfortunately, find we need them. Personally, I find that the level of infection is so high and rapidly rising that I find I do not want to risk doing much just now where other people will be near me. I am having a zoom Christmas again and the family is very keen to keep me safe.

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Hi @Lababe up a creek without a paddle springs to mind.

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A great big welcome @MaddyH I also have Chronic lymphocytic leukaemia (CLL) and have been on watch and wait for several years too.
Personally I am not going into shops or crowded places and miss that social interaction with family and friends so much.
I go for an early morning walk round and round a local rec, I am the only one without a dog !!
If near anyone I make sure my mask is on.
@MaddyH @Loverlygal and @Lababe we can support each other on our forum and don’t forget we have Blood Cancer UK campaigning and informing us and their support line is there if you would like to talk to someone.
Better safe than sorry I say, look after yourself.

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Totally agree Labebe. Given the process for getting antibodies/antivirals from local Covid Medicine Delivery Units (England) is meant to be effective from 16 Dec, where is this letter we are due to have received? Along with a PCR test sent to us to keep at home in case we get symptoms (have they even got enough PCR tests to send out??). They want to keep us out of hospital but comms are yet again too little, too late. I will open a few Christmas presents with my 92 year old mother in law, with my hubby and I sitting outside on the patio, and her inside with the patio doors open. And we will FaceTime with my bedbound father in law upstairs who has carers in 3 times a day (too risky for us to go indoors). Until cases come down and preventative antibodies come along (I have zero antibodies after 3 jabs, and per latest PROSECO findings, looks like my T cells may also be under par from my bendamustine treatment) , so looks like we will continue shielding (and sadly it sounds as though Evusheld is struggling against Omicron).

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I suppose we are reliant on our own caution and on groups like Blood Cancer UK keeping on the Gov’s back re the 4th or booster vaccine. I expect I will be called cynical but I have felt for some time that we were collateral damage, expendable unless we take up hospital beds and don’t get well or die quick enough once there. If you had asked me a year or so ago I would have said people would not be happy to carry on as normal with 150+ dying of Covid every day for weeks at a time but they clearly are, so we can only hide away as much as our work/life allows because guys, our welfare is not top of the list for anyone except our nearest and dearest. Good luck to all.

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Hi @CaroleCW and welcome to our forum, it sounds as if you have a clear plan of what you are going to do and how to do it as safely as possible.
You are making the most of another Covid festive period.
We will be supporting each other on our forum over the festive period and the Blood Cancer UK support line will be available, except for Bank Holidays, if you would like to talk to someone.
I look forward to hearing more from you.
Stay safe

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My family are coming for Xmas but I’m wondering if I should cancel their visit because they have been working in London. It’s so difficult to know what is the right thing to do. Is anyone else struggling to make the decision?

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I think we’re all really confused and bewildered at the moment. It’s bad enough dealing with the cancer situation without all of the Covid uncertainty too. Yes we’ve been forgotten again by this government. The only leadership we’ve seen has been from charities like Blood Cancer UK who have been there for us all along and tried to make everything clear but they’ve got their work cut out in the current environment. Whatever you all end up doing for Christmas, I hope you’re able to make it special.

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I do wonder at the stupidity of some people. I am working from home and have done so since covid even though the office emails state everyone should be in the office. Yesterday they went ahead with a christmas party even though they had 2 positive covid results from staff and 2 pending. I am not sure my boss knows the implications on me if I was to work in the office but luckily my manager does and even when he drops of files he puts them by my front door and stands back. Do people think they are immune? Do they not think of the implications on others by there stupid thoughtlessness?

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Oh @Chrispy what a really unbelievable example with your office.
I don’t know what to say and that is why we are feeling adrift…again.
Thank goodness for the sense of your manager.
We have to ensure our own safety and I intend to !!!

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Oh @Strad what a dilemma.
I have just spoken to my husbands 2 sisters and told them we will not be coming over to see them in the for seeable. They sort of understood, but I still felt the emotional blackmail.
There is no right or wrong decision, it is a personal decision in everyone’s personal circumstances.
One of the wonderful things about this forum is that I know whatever decisions I make I will not be or feel judged on here. Aren’t we lucky.
Let us know how you get on.

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Covid has made the decision for me. My daughter in law has been walking to work with a friend who has just tested positive today, so that decides it.
It’s good to know this forum is here and is so understanding.

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Weird @Strad how things work out, you will have our forum family over the festive period with you now!!

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I feel better already……thanks Erica

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Last Friday (17th December) I rang my GP surgery to try to book my “booster” also referred to as a 4th vaccine but was told I have to wait until 6 months after my “3rd primary vaccine” and no amount of pointing out that the last one was a “3rd primary dose” and not a booster was going to sway it with the voice on the end of the phone. Following this I began considering who I would email - JCVI; NHS; Boris; in the vain hope of getting some positive info. In the meantime my wife and I went out and did some food shopping.

Upon our return the post had arrived and a letter addressed to myself in an envelope marked NHS and thus opened it wondering what it might be.

Good news - the JCVI has “…announced a new vaccine strategy for vulnerable or immunosuppressed patients. The advice suggests all such patients are eligible for a booster jab after 3 months of their 3rd vaccination.” The letter also goes on to say that the letter provides “proof of eligibility”.

Saturday post arrives - again good news (al least for myself). The letter starts “The NHS is using new treatments for coronavirus.” I read this as the new pill that is now being dispensed to the vulnerable. Essentially if I tested positive using a PCR test kit I would qualify for this new treatment within 48 hours - once they receive the PCR and they get the result the NHS will contact me within 24 hours for a telephone appointment with a health professional.

On the face of it things seem to be moving in the right direction but despite the letters I most certainly don’t want to get Covid. At present we are avoiding other people like the plague.

So come Monday I will try an arrange my booster jab and present the letter received as proof of eligibility.

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Double good news @Venus please let us know how it goes.
I will let @Alice_BloodCancerUK know.
Has anyone else heard anything?

Hi Lababe. Only just seen your reply. Thanks for sharing your thoughts. I am also wondering if I should have a zoom Christmas. It is getting more and more scary each day with the rise in infections. I’ve just started very early walks too.

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