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Shielding: 1.5million Extremely Vulnerable Humans Live Amongst You

May 16, 2020

I have been inside my flat in London since Wednesday 18th March 2020, having stepped outside my front door only for one blood test and one appointment with my specialist at hospital in that entire time.  On Tuesday 12th May I was informed all my appointments with my specialist are to be via phone call only from now on.

Gov advice -shielding June 2020

shielding advice as at June 2020

The only reason I now have to leave my flat is to have a blood test at my hospital.  Once every six weeks I will step outside and get into our car to be driven by my Sooterkin™ (who is trapped with me because of my condition), have bloods taken, and turn around and come straight back home again.  That’s the sum total of my outside action and will remain so for the foreseeable future.  The end of June is the purported date of release from confinement, and that is unlikely to remain a fixed date.

I don’t see me being outside the flat until 2021.  There are 115,000 people considered extremely vulnerable as a result of their blood cancer diagnosis in the UK, and I am one of them.  The population is 67,886,011 this week according to the United Nations, give or take a few.  I always knew I was special!

Humour is my tool for deflection, can you tell?

I have chronic lymphocytic leukaemia (CLL).  This is cancer, so yes, I have cancer.  I have lived with cancer since my diagnosis in 2014.  CLL is a chronic condition for which those of us diagnosed often start out in active monitoring, or ‘Watch and Wait’.  Basically, this means frequent blood tests, checking of lymph nodes, seeing if symptoms are developing (night sweats, fatigue, unexplained weight loss, suffering repeated infections/viruses) and waiting until treatment is required.  Once treatment is completed I will go back into watch and wait with hopefully vastly reduced white blood cell counts and no more symptoms.  I will never be in remission.  It is a weird cancer for people to get their heads round.

You may have picked up on the fact a phone appointment from now on will mean no physical checks of potential symptoms; this leaves a margin of error which I am not comfortable with.  It is what it is though.  I just have to hope I don’t deteriorate or start showing symptoms.  However, with regard to Covid-19 it is very important to emphasise the fact I am not having treatment is irrelevant.   CLL means that even the slightest exposure could kill me as my immune system does not work.  I might look healthy.  I am not.

I’ve been in hospital twice for chest infections since diagnosis (although have had about five – about the same amount as in the previous 40+ years of my life in total) and have to go direct to A&E if my temperature raises above normal for two days.  I have been using a facemask for aeroplane travel (not that I did much!) since diagnosis.

This helps me survive. Not funny, but true.

I’ve pretty much ignored all the government advice about Covid-19 as it simply does not apply to me.  Rates of infection above or below R 1? Pah (and also, huh?)!  Slow opening up of shops? Meh!  Allowing children to re-enter the festering pool of infection that schools have always been? Whatevs!    (for the record, I say NONONONONO!!! We are not ready yet!)

It’s irrelevant to me as it does not take into account my condition, and for some time I have found myself quite happy just to ignore the government.  I get my advice from Blood Cancer UK and CLLSA (links below).  Chronic pain and chronic conditions meant I was READY for lockdown as I am quite frequently unable to leave my flat anyway.  The lack of choice this time is dictated externally by Covid-19 and not my body being in pain and/or tired.  I don’t have to make the decision and that is quite freeing.  I have hobbies I can do from my laptop.  I was ahead of the curve; chronic conditions for the win!

Even better for those of us with disabilities/conditions that limit life activities, social events became distanced and online which meant that they were accessible to so many more people than ever before.

Of course, I’ve had down days and I have a feeling they may be about to become more frequent.  Today is not a good day.  This is as a direct result of governmental policy.  Each attempt at opening up the country before it’s ready, as the scientific evidence amply shows we are not, means a pushing back of the release date for people like me who are classed as ‘vulnerable’ such as the elderly and those with underlying health conditions.  Each choice an individual makes about their own compliance or non-compliance with lockdown adherence and social distancing is a decision they are making for everyone they may meet and everyone those people may meet.  We are not deciding for ourselves anymore, but for everyone.

It’s not just me either.  My Sooterkin™ must shield with me.  He leaves only to go to the nearby shop for essentials; we have our big food shop delivered and receive a government food parcel every two weeks which we now donate to the local NHS hospital food shop.  That saga of ineptitude in getting shielding letters from the NHS and texts from the government to get on priority lists and provide my employer with evidence was a nightmare and for another blog.

I am one of a very small group of people affected in this way.  I see every day people getting too close, touching, hugging, protesting at their right to a haircut/latte and to put the staff required to furnish this at risk, screaming that they need to be ‘free’.  I see economists putting profit before people.  I see politicians looking at the GDP instead of the death toll.  I know I am on a list of expendable people.  I know I am at the beck-and-call of the most selfish people in the country whose ignorant and/or selfish actions extend lockdown and risk the lives of so many.

I believe we should as a country act as we would to protect the most vulnerable in our society, not to benefit the majority who are not as vulnerable.  I believe we need the curve flattened for a prolonged period, not just a dip for a moment.  We need to recognise an effective vaccine may be years away, and for people like me we won’t be able to have the vaccine anyway.  I hope we have the compassion and moral strength to behave in this way.  Presently I fear we don’t, and for me that is deadly.

 

Links to health sites (UK based):

https://bloodcancer.org.uk/

https://www.cllsupport.org.uk/

https://www.nhs.uk/conditions/stress-anxiety-depression/mental-health-helplines/

 

 

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