Many people with blood cancer talk about belonging to a club they never wanted to join. Last week I joined another unwanted club when I tested positive for Covid. Before I go any further I need to stress that this is MY experience in the UK. Many people will experience Covid in both milder and more aggressive forms. My heart still breaks for those dear ones who didn’t manage to come through it.

I had spent a couple of days celebrating my birthday with my family when I started experiencing mild cold symptoms and a headache. I knew from reading about symptoms for the recent BA.2 Omicron variant that these were typical symptoms, although a head cold was obviously still a possibility.

I proceeded to do daily lateral flow tests, all of which came back negative. I’m aware that this has happened for other people. My anxiety levels started to rise and I knew that I needed to be sure of the diagnosis, particularly because I had received information that I would qualify for one of the newer antiviral or monoclonal antibody treatments, but only if referred within the first five days. I had received (eventually!) a priority PCR test, so I registered and completed the test before posting it in the priority post box in the village. The following day, after another negative lateral flow test, I tried convincing myself that this was only a cold, right up until the time my result came through via text message. Positive.

After trying to calm my shakes and rising anxiety I started to apply myself to the next step. Much has been said about the need for those of us who are clinically vulnerable to have a plan. I can’t stress highly enough how important I think this is. Thankfully I have an excellent team here in Leeds, including two lovely CNS nurses (clinical nurse specialists). They had already told me that if I tested positive I could contact them and they would refer me directly to the CMDU (Covid Medicine Delivery Unit) for assessment for treatment. Talking to others in online support groups I am aware that this is not the case everywhere. Some are not aware of having a CNS, or if they do have one, the nurse has no knowledge of how to refer. Others were told to contact their GP or call 111. The advice is that once a positive result is registered, the patient will be contacted within 24 hours by the NHS to sort the referral. My thinking is that rather than waiting for a phone call, it is better to be proactive and use our ‘plan’. It certainly felt better to be doing something rather than sitting back waiting for the phone to ring, so I contacted my CNS that afternoon and the referral was made.

Early the following morning I received a triage call from a nurse at the CMDU. She asked a lot of questions. Again from discussions with other in my support group (how amazing and important these groups are) I knew what sort of questions to expect. The most important thing I had learnt was that it was so important not to downplay my symptoms. My experience of Covid is that it is rarely at its worst in the first few days, yet this is the very time that we need the treatment in order for it not to become more serious. There is also a question about whether we feel our symptoms are getting better, staying the same or getting worse. Again I knew it was important to not suggest things were improving. I had heard of people who had been refused treatment because they had said their symptoms were not severe enough! Thankfully the nurse said I qualified for treatment and would be contacted by a GP at the unit. The GP asked similar questions and agreed that I was suitable for treatment and said I would then be contacted by a consultant! The consultant turned out to be a consultant pharmacist, who was extremely knowledgeable and helpful regarding the possible treatments available in the UK (antivirals Molnupiravir and Paxlovid and a monoclonal antibody called Sotrovimab) and which was proving to be the most effective against the BA.2 Omicron variant (Paxlovid in his opinion.) The Paxlovid antiviral tablets were delivered to my house that afternoon.

There was obviously a degree of relief in receiving the antivirals, although one of the nasty side effects is that they leave a very metallic taste in the mouth for several hours after taking them. For the first few days I seemed to be coping pretty well. My husband was positive at the same time and he seemed to be more badly affected. He had woken with a raging temperature and was feeling pretty unwell. On reflection I was struggling mentally as well as physically. There has been so much said about the challenges for those of us who are immunosuppressed should we catch Covid and I couldn’t shake the anxiety that things would get worse, in spite of receiving the antivirals. It was a challenge to have any appetite but I made sure I at least ate enough to have some calories. A few days in I started to lose my voice and that night made the mistake of sleeping flat. During the night I woke up coughing and realised I had a LOT of mucus in my chest and sinuses. A quick check of my temperature and oxygen levels reassured me, but it was an uncomfortable and sleepless night. Again a quick call to my excellent CNS team helped me to feel reassured and supported. Even now when I have tested negative again I am dealing with an ongoing cough and extra mucus, as well as the tiredness that comes with it. I expect that will take a while to clear completely after such a nasty virus.

Many of us in the UK have in the last few days received an email regarding Covid treatments and how to access them in the light of the fact that free testing has finished as of today (April 1st). The suggestion is that “from 1st April you should check coronavirus symptoms using lateral flow tests, not a PCR test”. Obviously given my own experience I have great concerns about this as my own lateral flow tests were negative in the first couple of days of infection. It feels so important that we are able to be diagnosed quickly so that we can access treatment within those crucial first five days when the treatment is most effective.

Looking back over the past two weeks or so, I’m hugely grateful to all the professionals involved in ensuring that I had the best opportunities possible to recover from this horrible virus. It hasn’t been easy at all, physically or mentally, but there is something to be said for facing the thing you have been fearful of for so long and coming through the other side. There are definitely challenges ahead both with policy changes but also with simply venturing back out into the world without being constantly fearful. Prayerfully finding a way to live peacefully and with hope in this New Normal we find ourselves in.

Read More

UK: PCR requirement for COVID-19 monoclonal antibodies and antivirals to be dropped but patients now being refused treatment for not being sick enough yet

UPDATE on UK Monoclonal antibody roll out – dangerous misinformation, denial and how to avoid deadly delay