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Covid -v- Cancer

September 15, 2020

It’s Blood Cancer Awareness Month in the UK and as someone who has been living with chronic lymphocytic leukaemia (CLL) for over 6 years now, I wanted to write something positive, upbeat and hopeful to help raise awareness.  Unfortunately I’ve been struggling with what to write because I value honesty and authenticity in my writing and I’m just not feeling hopeful, upbeat or positive right now.

Covid-19 has directly impacted my CLL, both in living with the condition and with regard to receiving treatment.  I was told as long ago as October 2019 that treatment was imminent for me.  That means chemotherapy, although there are a variety of medications with which I could be treated so as yet I do not know what type of treatment I will be getting.

Such a pretty thing to be causing so much trouble… *insert joke here*

You may be thinking that it is a long time since October 2019 and surely I must have some idea of what form the treatment might take.  I would have if it had not been for those pesky kids the pandemic.

In January 2020 I had a bone marrow aspiration and biopsy (removal of bone and marrow) to see what was happening (70% CLL in the marrow).  This, together with several other symptoms worsening, meant I was scheduled to undergo the initial treatment stages in March 2020.  Guess what else happened in March 2020 (a little later than some of us would have wished and medical professionals wanted)? 

I was not aware of any of this.  I had been told I would be starting treatment “imminently” in October and have heard that word at every appointment since.  The lockdown hit, I had to go into full shielding (and I remain there six months later) and everything was put on hold.  As soon as we you all started to come out of lockdown in August I was informed by my specialist that my treatment was due to start in March and had been delayed as a direct result of the lockdown.  It was determined by a multi-disciplinary medical specialist team that it was safer for me not to have chemotherapy and stay shielding.  I’ll let you just sit there with that fact for a moment whilst considering that the pandemic is worsening again.

I had CBT/Psychotherapy during lockdown as a result of the myriad mental health issues this all put me through (and continues to put me through).  I was still attending hospital every six weeks for blood tests and review appointments, although the latter became telephone-only appointments very quickly throughout this period.  This meant physical symptoms were no longer monitored; my ever-inflating lymph glands, nodes and spleen went unfelt, and other symptoms were not weighed/measured and found wanting.

Hurrah for August during which month I am scheduled for an appointment on 9th September to start treatment – no more blood tests/bone marrow aspirations or biopsies required.  I am then referred to the FLAIR trial which has a great reputation and positive results and has only been available for three years.  It’s at a different hospital, so I wait for a referral to come through.  It arrives, and the date is 23rd September.  The letter also confirms it is a telephone-only consultation.  It’s a fortnight later than my initial specialist informed me it would be.  It’s because the Covid-19 situation is worsening again.  It’s because I am very, very vulnerable to infection.  It means my chemotherapy may be delayed yet again.

It’s nearly a year since I was told I needed treatment for my cancer.  Until I start treatment I have been told by my specialists to stay shielding.  I don’t know what is going to happen from today, but I’ve just had to call the new department to which I have been referred because they had an incorrect telephone number for me for the telephone consultation they have booked on 23rd September.  It’s a telephone consultation.  I don’t think symptoms are going to be monitored at that appointment.  My life, literally, is on hold again.

It’s very nearly a year since I was told treatment was imminent, and it remains imminent.  I am doing okay to a given value of not, but with regard to the word imminent I would like to say to my specialists…

Image Description: a still from the film The Princess Bride with the character stating: “You keep using that word.  I do not think it means what you think it means.”

Well, at least I ended on a joke.


From → Autobiography, health

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