A blog about the other illness that starts with a ‘C.’

In mid-July I contracted the other ‘C’ for the third time.

There’s so much stigma & arguing over COVID-19, that I felt it was better if I didn’t put any reference to it in the title, or the subtitle. How bloody ridiculous is that?! I’ve also avoided writing about it, apart from in my first ever blog, but I felt the need to return to writing about my COVID-19 experiences because I’ve had it very recently.

Despite having six vaccinations, & still masking, wearing PPE & testing regularly (& everyone close to me is doing the same where appropriate), to my surprise & annoyance, I contracted COVID-19 for the third time.

I know that just because I’ve had my jabs & I continue to take all the necessary precautions, it won’t stop me from getting COVID-19, but I felt that my chances of catching again were minimal. I was wrong.

I became ill very suddenly over one afternoon – a bit of a cough but a really sore throat, earache, & achy muscles. Very familiar symptoms. I took an NHS lateral flow test which said I was negative but not convinced, I did a second lateral flow test supplied by work. Sure enough, a faint line on the ‘T’ level appeared. (I mean, how rubbish are the NHS tests anyway? Sometimes I have to go through nearly a whole box before I get a test that actually works!) I confined myself to my bedroom. The following day I tested twice again & this time the ‘T’ line was very thick on both the NHS and the work-supplied test, & I was definitely feeling hotter & rougher than the day before.

As per the guidance, I rang 111 (because it was the weekend) & reported that I had COVID-19 & that I was in the CEV (Clinically Extremely Vulnerable) group, thus eligible for antivirals. A GP then phoned me back but he was clueless about how I should get the antivirals (I swear he didn’t actually know) & he said gruffly that I should go to the hospital if I got worse. I replied that the hospital was the last place that I was going, as I had been told that I wouldn’t be offered a ventilator because I was deemed one of the people that wouldn’t survive COVID-19. End of conversation with the GP who didn’t like what I said. Oh well.

If you’re one of my ‘blog regulars’, you’ll know the story about how I found out that I had a DNR (Do Not Resuscitate) placed on me. Forgive the repetition, but for new followers, this is what happened:

I was diagnosed with Breast Cancer just before #Lockdown started. I was given an operation date but it was canceled four days later over the telephone. The reason given was that it was too dangerous to take me into hospital. I was advised that if I caught COVID-19, it was deemed highly likely that I wouldn’t survive it. And it was complicated by the fact that I would probably need a ventilator after the operation because of my lung issues. There was a severe lack of ventilators available. And even if a few more became available, I was deemed someone not worthy of having one because I was unlikely to survive.

The irony was that I had COVID-19 twice before being vaccinated & although I was very ill, I wasn’t hospitalised. When I had my operation, I didn’t need a ventilator either. My ‘comorbidities’ (such a charming phrase!) appear so much worse on paper than in reality.

The first time I contracted COVID-19 it was March 2020 & it was likely that I caught it from the Breast Cancer Unit. However, I had no idea that it was COVID-19. At the same time, I’d started on Tamoxifen in an attempt to stop the cancer spreading whilst I waited for a new surgery date. All cancer drugs are powerful, as required. The cancer & Tamoxifen were battling inside my body, making my chest hurt & my sternum & ribs grind – at least I thought it was the Tamoxifen making my body hurt, but it turns out that it was also the effects of COVID-19.

The second time I caught COVID-19 was in January 2021. My lung consultant wanted me to have my first vaccination in December, but because West London still hadn’t got its s**t sorted, I was still unvaccinated. Ironically I got COVID-19 the week before my first vaccination date. So I waited additional time before I could get vaccinated, again, putting me at risk again.

By getting COVID-19 a second time, I realised that I’d had it before because my chest, sternum & ribs were grinding again. I also had a lot more very unpleasant & aggressive symptoms. I’d never felt so hot in my life. I had terrible migraines. I couldn’t move for days. It completely wiped me out. I got really angry about how terrified I’d been about contracting COVID-19, when in fact, I’d already had it & I had already survived it.

You’ll forgive me for not having any empathy or sympathy for COVID-19 deniers or those who moan about masks & PPE. My cancer got worse whilst I waited an additional four months for my surgery. Am I bitter about that? OF COURSE I BLOODY AM!

Anyway, back to the present day. After having no luck with getting antivirals from 111, I rang my GP practice the next day & they booked me in for a callback with the COVID-19 unit at the local hospital. They didn’t ring me. Together with the surgery, we spent another two days re-booking appointments because the unit said they’d rung me, but my phone wasn’t working (it was).
Then they emailed a couple of letters about missed appointments, & from these letters, I was able to work out which hospital was ringing me, & from which department. I then rang the respiratory unit at the local hospital, & one of the receptionists there went out of her way to help me. She did an internal email & bingo, five minutes later the unit called, but still claiming that my mobile wasn’t working. In fact, their phone kept cutting out so I suggested that it was the unit that had the dodgy phone! After a phone assessment in which their consultant was struggling to work out whether my cancer medications would interact ok with the antivirals, I was deemed ‘ok’ to have Paxlovid. I waited another day for the courier to arrive. When he arrived, he said he had “no idea” if he was carrying medical supplies & he didn’t need any kind of signature as proof of receipt. Oh well.

Five days into the virus & was it really worth starting the antivirals?

Well I gave them a go. I started vomiting & other nasty stuff, & rashes started to appear on my arms & knees. Turns out I was allergic to Paxlovid. I stopped taking the pills after two days. Ironically it took me another five days to get over my stomach upset & chronic migraines. I was more ill from the antivirals than the COVID-19 itself! Because I’d had all my jabs, the virus didn’t have that much effect on me, I just felt a bit tired & hot. My cough, sore throat & ear ache went away fairly quickly.

Because of my experience, I ask whether COVID-19 is being taken seriously in this country (it isn’t in my opinion). I was ill & lying in my bed when I was hunting down the COVID-19 unit – frantically googling on the internet & getting my Cockney Essex voice to be recognised by the hospital’s automated switchboard service. I was stressed out when I was taking calls from the surgery who were trying their best to help me. I was tired from explaining my personal circumstances to the 111 service & to the COVID-19 unit who quite frankly, didn’t give two s**ts. And yet I’m mindful that the whole of the health service is on their knees & they can only work with the system that’s badly broken. I feel bad that I have to write negative stuff, but it’s my experience & the losers are always the patients.

There’s still that manipulation of the public, you know, the way that the official guidance is worded, e.g. ‘Here is some guidance – it’s up to you whether you follow this guidance – but if you don’t follow it & you catch COVID-19, then it’s your fault for not following the guidance.’

I still can’t get out of this loop & I’m blaming myself for catching the virus. I went to an industry summer celebration & I had such a great time. Because I hadn’t seen in person, or let alone hugged, many external colleagues for such a long time, I threw caution to the wind. Off came my mask & I hugged as many assembled guests that I could. I’ve never removed my mask for a long length of time before, (except for a photo), & I rarely hug people. I’m usually the only one wearing a mask to gigs, on public transport, in the shopping centre, etc. I’ve rarely had abuse for wearing one – can you imagine the ROASTING I give people if they do. Plus if you answer these anti-maskers with, “I’m wearing one because I have cancer treatment,”people blush & stare at the floor. It’s a great shutter down on awkward & intrusive conversations.

So, no hugging or removing my mask again, I’ve learnt my lesson.

The NHS guidance changed again in late June 2023, & it’s made my situation much worse as a CEV patient. Now I can only get free NHS tests if I have symptoms or I’ve been directed by a health provider to do one. I don’t even have to test before going into the chemo unit now. I can politely ask for staff in healthcare settings to wear masks but they don’t have to (some of my providers do, some don’t). I’m so lucky that the care agency staff are still testing and wearing masks to keep me safe, as are my colleagues at work.

I know that masking & taking the main precautions have a positive impact because only once did my partner & I have COVID-19 at the same time. We live together. I’ve only once passed it to a PA as well.

I’m gutted that I contracted COVID-19 in July because I missed out on the only two festivals that I booked to go to. It’s unlikely now that I’ll be going to any. I’m not going to Carnival (Notting Hill) either this year. It’s weird. It’ll be the first time since I was 17 that I’ve not been to, or worked at, any festivals.

I feel that I’ve made a good recovery from COVID-19 which I’m relieved about. The GP recorded my experience with 111 and the COVID-19 unit, so hopefully that will prevent others from having such a horrible time. I’ll keep taking all the necessary precautions.

If you can / feel able to, please isolate away from others if you get the virus, & please, take the precautions and mask up. Err on the side of caution, not just because COVID-19 cases are on the rise again, but it’s about respecting & caring about everyone in the community around you.

I have three friends that either had their treatment temporarily paused during #Lockdown 1, couldn’t get a face to face appointment with their GP & didn’t realise how ill they were, or their treatment was late in starting because there was such a backlog of other patients to be seen first. They all died of cancer within the last two years.

I’ve had so many conversations with cancer surgeons & oncologists who are gutted that their patients have died needlessly, or that they’ve had to prescribe more complicated treatments because their patients weren’t referred sooner.

I’m not lying or exaggerating about any of the above. It’s starting to come out how bad life-saving services have been affected by the pandemic & as someone who has experienced both cancer & COVID-19, I’m right in the middle of this s**tshow.

And it ain’t a good place