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CLL – What is “A Normal Life” Anyway?

May 21, 2021

Wikipedia: the first case relating to the ongoing COVID-19 pandemic in London, England, was confirmed on 12 February 2020 in a woman who had recently arrived from China. By mid-March, there had been almost 500 confirmed cases in the city, and 23 deaths; a month later, the number of deaths had topped 4,000.

UK – 20th May 2021: there have been 4,452,527 diagnoses and 127,694 people have died. 20,870,453 have received both vaccination doses.  It is not known how well the vaccines are performing yet.

It’s 21st May, 433 (inclusive) days since I started shielding and there is no end in sight based on one simple reason – I have blood cancer.  Mine is a chronic (meaning with me for life) rather than acute (meaning needing immediate treatment) form of blood cancer and will be with me until I die.  Indeed I may not die from the cancer (no-one knows nor can predict that); most CLL patients are diagnosed in their late 60s, I was 42.  Some people are younger than that.  Some live short lives, some 30 years plus. Chronic Lymphocytic Leukaemia is diagnosed with the words “this is the cancer you will live with, not die from” issuing from the specialists’ mouths.  My first consultant told me that I would live for up to ten years.  I have a different consultant now but hearing a potential 10-year life span as the average life span at the age of 42 is terrifying.  I learned not to read the statistics on CLL after a while.

Times have changed.  From being a cancer that you took calculated risks which were reasonably minimal with regard to ordinary infections, CLL has become one of the most dangerous to be living with in these pandemic times.  CLL means I have a very compromised immune system.

This is how I lived with CLL pre-pandemic:

  • regular blood tests followed by scheduled visits to the Specialist at hospital,
  • getting the annual flu jab and five-yearly pneumonia jab,
  • contacting the specialist/GP upon feeling unwell in any way,
  • regularly taking my temperature,
  • checking lymph node size and shape,
  • three hospitalisations so far, all with chest infections,
  • awareness of hygiene knowing any infection through any type of cut could rapidly develop into sepsis,
  • avoiding children who have been recently vaccinated with any ‘live’ virus (most of them are ‘live’ viruses-see image) for at least two weeks (no covid vaccine is ‘live’),
  • avoiding anyone who is ill or thinks they might be,
  • monitoring for other symptoms such as drenching night sweats, bone pain and fatigue,
  • maintaining awareness of those around me at all times,
  • I had to quit swimming (I was a 3-mile-a-weeker just a decade ago) as it gave me chest infections (see above).
image text: 1. Headline says Live, attenuated vaccines.  Body of text says live, attenuated vaccines contain a version of the living microbe that has been weakened in the lab so it can’t cause disease.  Because a live, attenuated vaccine is the closest thing to a natural infection, these vaccines are good “teachers” of the immune system.  Example: vaccines against measles, mumps and chickenpox.

I’ve also been told I am in imminent need of treatment since October 2019, but the pandemic meant many treatments were delayed and mine in particular as it was more dangerous for me in the hospital than to receive treatment for my cancer.  Visiting the hospital for consultations is too dangerous so being treated was and still is more so.  The vast majority of people with CLL have not been able to have meetings with their consultants face-to-face to monitor their conditions for over a year.

At every appointment for 18 months I have been told over the phone that treatment will be put it off a bit more as it still isn’t safe yet.  It’s 16 months since I had the preparatory bone marrow biopsy and aspiration and the CT scans on my lymph nodes and enlarged spleen.  Thankfully, staying shielding means I am not exposed to the everyday infections that most people wouldn’t even notice as their immune systems work.  Shielding has helped me postpone the treatment and maintain a level of health that without the pandemic I would not have had.  The irony is very much not lost on me.

My ongoing normal is to stay away from people.  I live in a city, so that means shielding, with any venture outside being an internal discussion weighing up risks to physical health against the benefit to mental health.  The risks, of course, keep changing.  We now have another variant, apparently even more dangerous than the previous variants.  Lockdown has ended but yet another wave is expected.  I’m safest indoors.

I’ve seen my parents once, because they shielded for days before I visited.  I’ve seen friends at a distance, because they take covid-19 tests before they see me.  I have very occasionally allowed risk to enter my home, prioritising my mental health and friends over my physical health and life.  I don’t see any friends that have children or are around children, or that aren’t tested, or that I have to travel to see, because I cannot guarantee they are safe for me to meet.  I have to rely on what people are telling me about their own days and the risks they may have taken in order to make choices about interacting that could, if I’m wrong, lead to infection and potential long-covid problems or death.

I’ve unshielded occasionally for the sake of my mental health.  Each time is a risk-assessment and trust exercise.  Shielding is strongly advised by government but is voluntary, and support for workers furloughed ends in September.  The pressures on me to unshield are immense, internally and externally.  I’m having to pay attention to statistics again.  My CLL is no longer one to live with, it is one that is preventing me from living in the way I used to.  My activism, volunteering, work, and social lives are now only available through a laptop screen.  I am privileged however to be able to shield; I have a supportive workplace, and supportive partner, family and friends.  I don’t live alone.

The reason I do not see an end to needing to shield is because, for me, nothing is changing.  COVID-19 is still around, there is another new variant, and the known risks have remained the same or worsened for people like me.  I used to think I wasn’t rare, that if I had this combination of conditions and pandemic and environmental risk, then so must many others.  I’ve come to realise I am the only person I actually know of still in the position of having to shield.  I’m a bit more original than I realised. CLL has changed my life in a way not even the specialists could see coming.  Living with CLL has been redefined and what constitutes my life has changed profoundly.  My new normal is very different to anyone else I know.  It’s a lonely position to be in, but thanks to friends and family and the world wide web (all hail Sir Tim Berners-Lee) at least I’m not alone.

Have some statistics as of 20th May 2021, all part of evaluating my position and constantly updating:

Cases in [the borough in which I live] – source: https://coronavirus.data.gov.uk

1 confirmed case is someone who has tested positive for coronavirus.

8 new people had a confirmed positive test result reported on 19 May 2021.

Between 13 May 2021 and 19 May 2021, 61 people had a confirmed positive test result. This shows an increase of 48.8% compared to the previous 7 days.

Vaccinations in [my borough]

Vaccines are currently given in 2 doses, at least 21 days apart.

121,772 people had been given a first dose by the end of 18 May 2021.

61,251 people had been given a second dose by the end of 18 May 2021.

Healthcare in (my local) NHS Trust

Some people with coronavirus have to go into hospital.

0 people with coronavirus went into hospital on 9 May 2021.

Between 3 May 2021 and 9 May 2021, 6 went into hospital with coronavirus. This shows an increase of 200.0% compared to the previous 7 days.

There were 4 patients in hospital with coronavirus on 11 May 2021.

Statistics for clinically extremely vulnerable (CEV – that’s me) people will be released by the ONS (Office of National Statistics) on 8th June 2021. This is all they can say at present:
Clinically extremely vulnerablePeople who are identified as clinically extremely vulnerable (CEV) are at very high risk of severe illness from the coronavirus (COVID-19). Up to 16 February 2021, CEV people were identified either because of a pre-existing condition or based on the clinical judgement of their clinician or GP that they are at higher risk of serious illness if they catch COVID-19. From 16 February 2021, individuals can still be identified as CEV by these routes, but also by COVID-19 population risk assessment.

The most up-to-date but very small study from the United States (Sloan Kettering: Dr. Anthony Amato, et al, pub. 13 May 2021) – bold highlight by me:
“In this study, we found that only half of vaccinated patients with CLL develop detectable anti-SARS-CoV-2 S1/S2 antibodies. Furthermore, we found a significant difference between rates of detectable anti-SARS-CoV-2 S1/S2 antibodies between treatment-naïve patients (17/18, 94%) and those who had received CLL directed therapy (6/26, 23%). These striking findings suggest that vaccination in patients with CLL may not confer the efficacy that we expect in the general population, particularly in patients receiving CLL-directed therapy. … specific guidance for patients with CLL are warranted as the current Center for Disease Control and Prevention recommendations regarding relaxed personal protective equipment use when around other vaccinated people may not apply to this population [24]. Without consistent antibody responses, patients with CLL should continue to exercise extreme caution following vaccination until further data on clinical efficacy are available.”

boonchai wedmakawand/Getty Images.
Image description: A close-up of a microscope, with a blood sample being placed by a pipette onto a glass slide below the lens by a hand in a blue latex glove.  The glass slide is anchored by two metal straight-edged grips.

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