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Shielding-10 months inside

January 24, 2021

I have now been shielding for ten months and one week.  Not that I’m counting of course*cough315dayscough*, nor am I having to tick days off on a calendar just so I know what the day and date is. My hair is getting a life of its own, and I’m considering contacting Hagrid for a DNA test. I have dip-dyed hair colouring completely by accident.  I don’t have to think about how I present to anyone and that’s very relaxing.

For the last month or so I have been feeling quite positive about my shielding experience.  It is important to me to try and find the positives, to boost my mental health.  So, as a lover of a good list, I made one.  A list that is, I make no value judgement about its goodness:

  1. My CLL has improved.
  2. My pain levels are easier to manage.
  3. I can plan my life much better as there is little to plan.
  4. I am not letting anyone down by cancelling arrangements last minute.
  5. I don’t have to reject invites as I’m not allowed to accept any.
  6. I’ve benefitted and been humbled by so much kindness towards me.
  7. I’ve seen online shows and comedy I would not otherwise have been able to see.
  8. I’ve not had to worry about accessibility at all (for my osteoarthritis ).
  9. Despite not liking phone calls, I’ve made more than ever before, just to keep in touch.
  10. Introspection has led to positive breakthroughs for me.

That last one has had a profound effect on my mental health in a very beneficial way, see this blog.

The first one on that list was the biggest surprise.  I have chronic lymphocytic leukaemia , and since October 2019 I have been told that my condition was very close to needing treatment to reduce lymph nodes and spleen swelling, reduce the white blood cell count and raise the haemoglobin.  However, in January 2020 a new virus was starting to become known, and by 15th March I was in shielding.  At that point my white blood cell count was 293.  I was referred to a trial ending at the end of 2020 in the hopes that my treatment would be one of the new drugs being tested; there were already many positive results available for review by medical specialists in utilising the treatment. 

At my first appointment in September it was made clear to me that my suspicions had been correct and the treatment was in part to be delayed because of the pandemic.  Partly the overloaded NHS cannot cope, and partly because of the holistic view of my condition and my being shielding. It was clear by September that the pandemic was into a second phase (third now…) and there was a lot more for a specialist to consider deciding to go ahead with treating me.  At this point I had taken myself into psychotherapy as I was not coping with the situation I was in.

By November 2020 my white blood cell count was 209 and all other counts had stabilised.  The only thing that is different about my environment is that it is currently limited to being indoors at home.  I assume the fact I am not being exposed to the everyday germs and pollutants that living in a city brings is the reason why, and in conversation with my specialists, so do they.  I am not cured, but it means that my treatment can safely be delayed.  The trial I was referred to has finished, but there may be a new one in November utilising a newer treatment which has fantastic results for my particular presentation of CLL.  In case you are wondering how I know that, it’s because the US already has all these drugs available in its private healthcare system, and the EU has fantastic results from their tests too.  We now have to do our own tests as we are not part of the EU so cannot licence those drugs without undergoing our own stringent testing too.  However, we can know what the results are likely to be.

With CLL, it is the case that the longer treatment can be delayed, the better.  It is a chronic condition so I can never be cured or go into remission as the term is understood with acute cancers.  My condition can improve to the point it is almost undetectable, but I will always require constant monitoring.  Most importantly, once you have undergone a treatment protocol, you cannot repeat it.  The more types of treatment, the better.  As I am considered very young to have been diagnosed with the condition (average age is in over 60s and I was 42, most diagnosed are AMAB (assigned male at birth) and I’m AFAB (assigned female at birth), there is a possibility that if I am treated too soon I may run out of forms of treatment to have.  On the other hand, I may not.  I’d rather play the long game and put off the treatment as long as I can!

Shielding has saved my life simply by protecting me from the covid virus.  It may also be saving my life by helping my body deal with my leukaemia and delaying my need for treatment.  Who knew that 10 months inside and counting would be such a positive thing for me?!

From → Autobiography, health

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