I've got leukaemia and caught Covid two weeks ago

On a normal day, this piece would have taken me about half an hour. It requires no research; all I have to do is write about me.

Well, this is no normal day. I am six hours into the piece so far, with no real prospect of finishing it today. That’s not because it’s complicated, or I am having to think much about it. It’s for a far more prosaic reason. I am too tired to write.

As I write that, it sounds pathetic to me. I don’t just write for a living – I realised many years that I live to write. Give me a keyboard and that’s me happy and taken care of.

So the idea that I am now finding the most basic part of that process – sitting at my keyboard and bashing out letters – too tiring just doesn’t compute. But it should. Because 15 days ago I caught Covid.

I have chronic lymphocytic leukaemia, or CLL as it’s known. Whether it’s the CLL itself or the treatment I am having for it (the wonder-pill Ibrutinib), my immune system doesn’t work properly. And so, like most people reading this I imagine, I have spent most of the past two years in various degrees of panic, doing (almost) everything possible to avoid infection.

You don’t need me to tell you how tough that is, both in the physical sense that it’s difficult to avoid an airborne virus, and mentally in that it’s not the way humans were meant to live, isolated and cowering.

The Covid vaccine has been a modern scientific miracle, but for many of us, it has perversely made our sense of isolation even worse.

As it became safer for the vast majority to move around in relative freedom, the risks for those of us who haven’t responded well to the vaccine increased, as others stopped wearing masks, social distancing etc.

I’ve noticed this with delivery drivers, for example. Previously they would leave a delivery on the doorstep and stand back, usually masked. Now, no one wears a mask and they stand right by the door.

I’ve tried to think how I caught it, and that’s the only answer I can come up with. I’ve not been taking more risks than before or loosening my concern. But to be blunt, it doesn’t really matter how I ended up succumbing after two years.

Ironically, I have spent much of the past few months campaigning for the Government to change its policy on antivirals and monoclonal antibody treatments. Or rather, I’ve been trying to support the superb campaigning by Blood Cancer UK.

It needs to be stated how much of a comfort it feels to know there is such a professional, caring and committed group of people battling on our behalf. It has made a big difference knowing Blood Cancer UK has our backs.

The Government rightly trumpets its superb collection of treatments for the Clinically Extremely Vulnerable (CEV). But it is bizarre and plain stupid to have no plan of any sort to prevent us catching Covid in the first place, especially when there are huge stocks of some antivirals.

From the digging I’ve been able to do, there are not even any informal discussions taking place with AstraZeneca over purchase of Evusheld, which delivers monoclonal antibodies as a form of prevention, and which is being used in other countries. It is as if the CEV just don’t count.

Treat us if we get ill, but until then our needs are an irrelevance.

I had been warned that, were I to get infected, I would face a battle to get the Covid treatment I would need. For whatever reason, I have never been included in the lists of the CEV who were sent a priority test kit, with the idea being that a positive result would lead to an automatic consultation over antivirals.

My experience with my GP throughout the pandemic went from bad to worse. I remember their refusal at the start of the vaccine roll-out to accept that CLL counted as a priority need.

And at every point I made contact with them, I was repeatedly met with the classic ‘computer says no’ attitude. (I changed practice and it made zero difference.)

So when I tested positive for Covid on Tuesday 1st March, having felt the first symptoms the night before – banging headache, shakes and shivers and a temperature – I expected a battle. I had no PCR test because I had been repeatedly refused one. All I had was my lateral flows.

Sure enough, my GP was useless and said I needed to go and get tested at a drive in, but that they would be unable to help me as I wasn’t on the list.

It was like talking to a brick wall – they could see on my notes I had leukaemia, but because the computer hadn’t marked me as CEV it didn’t count!

But I have been extremely fortunate throughout, because however bad my experience with GPs has been, my consultant (Dr Kirit Ardeshna) and his team at the University College Hospital Macmillan Centre have been sensationally good, always going the extra mile.

So, as well as contacting my GP, I contacted Victoria, the clinical nurse specialist (CNS). She was as brilliant as I expected. Within two hours I was on the phone to the dedicated CEV triage team at Watford General (the hospital whose catchment area I was in for treatment).

They arranged for me to have the monoclonal antibody treatment the following day – in other words, just two days after my first positive lateral flow test.

Once I was in the system, it worked perfectly. I was met outside A&E at the time I was given, and the nurses who treated me could not have been nicer or more professional.

Chatting to the three other patients being treated alongside me, however, it was striking that every one had faced a battle to get there. I was so lucky to have Victoria, my CNS. She got me into the system and I’ve not looked back since.

But none of the others there had a Victoria, and they were all on their fourth or fifth day – the deadline for treatment. At their lowest ebb, they had to battle to be treated. The system is a mess.

As to the impact of the monoclonal antibody treatment – I was given sotrovimab. It took half an hour and then another hour of waiting to be sure I hadn’t had a reaction.

I am pretty sure it has saved me from anything too bad. I am now into Day 15, and at no point have I suffered anything worrying. I have – honestly – had worse colds.

I’d say the worst aspect for the first few days was the cough and the bone aches, which kept me writhing. But for the past two or three days, all that has remained has been the cough. And where I started: the tiredness.

I’ve finished this piece, now, which I regard as something of a triumph.

And I am rewarding myself by going back to bed.

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