From cycling in Spain to shielding in south London

I got back from a cycling trip on the Spanish island of Mallorca on Sunday 15 March. That’s a story in itself, but this post is about the fact that, as a person whose immune system is compromised and for whom catching coronavirus could be very bad news, I’ve been practising this new activity known as “shielding” ever since I got back from Spain.

That basically means I haven’t left the confines of my south London house and garden in almost two weeks. During that time, I’ve had pretty much no face-to-face contact with any human being unless it’s been at at least a metre’s distance. That includes my husband – and I didn’t even hug my sons when they came back from uni last week. 

As soon as the COVID-19 pandemic broke, I reckoned I would be in the “extremely vulnerable” group that would be advised to stay indoors and avoid all but the most essential contact. So I started shielding of my own accord as soon as I got home from Spain.

It felt more than a little bizarre given how fit and well I feel – as evidenced by the fact that just days earlier I’d been cycling up and down hills in Spain (see photo) riding 50-70k a day. I ride slowly but I get there.

A text from the NHS Coronavirus Service one evening this week confirmed my new status. It pulled no punches. It said I was “at risk of severe illness if you catch Coronavirus”, that I’d to “remain at home for a minimum of 12 weeks” because “home is the safest place for you”*, that while at home I should “open a window” but not go out other than to any “private space” such as the garden or front path, and that I should stay three steps away from others indoors. A subsequent text advised me to have an overnight bag ready in case I’m hospitalised.

I love the outdoors, but I’m already starting to see “outside” as a dangerous place. Given the stark advice in those texts added to my own desire to stay well and the fact that London is the epicentre of the outbreak in the UK, it’s not surprising that I’m wary of leaving the house – even if it’s to get the treatment which has, largely, been keeping my cancer in check for the best part of a year.

The primary breast cancer I was treated for some years ago has spread to my bones and bone marrow. While it’s currently treatable – and is more or less under control – it’s ultimately incurable.

Somewhat ironically, it’s more the treatment I’m having that makes me immunocompromised than the cancer itself. This side-effect is managed with injections of a drug called filgrastim, which stimulates the production of neutrophils, the white blood cells that fight bacterial – not viral – infection. For the past few months, I’d been having just one of these, at my regular treatment appointment. In March, though, just as the outbreak was starting, the consultant prescribed an extra one for me to self-administer mid-cycle to keep my neutrophil levels up.

In 2014, I was lucky enough to get the chance to take part in a transatlantic sailing race, from the Canary Islands to the island of St Lucia in the Caribbean. It took 13 days and it’s one of the most exciting things I’ve ever done.

I had next to no experience of sailing. You just had to be up for an adventure, be a team player and be very good at following instructions (I can hear my husband snorting in disbelief at that last one but I can do that no problem if I decide I want to). Anyway, the pre-trip training included a one-day Sea Survival course that taught us how to use all the safety kit on board and what to do in an emergency. We spent a lot of time in the water at a local swimming pool with life rafts and the like. It was all well and good that we had this training,  but the key take-home message for me was do not fall overboard from a 72-foot long yacht that’s going full tilt in the middle of the Atlantic. The chances of you surviving are not good. 

I felt pretty much the same reading these texts I’ve been receiving. It really would not be good for me to catch this virus. I’ve gone from fretting that my treatment might be changed or delayed to fretting about the fact that next week I’ll have to leave the house on not one but two occasions – once next Wednesday to have my blood taken for testing and then again the following day, assuming the blood test results are ok, to start my 12th round of treatment. I won’t see the consultant for my results as I usually do as, rightly so, they’ve stopped face-to-face meetings.

My rational mind tells me it’s good news that my treatment plans are unchanged. Appropriate social distancing measures will be in place, I’m sure, but I’ll still be nervous.

It was a last-minute decision to sign up to the cycling camp in Mallorca. I did so after receiving “not bad news” in early March in relation to the two scans I’d had in mid-February.

I flew to Mallorca from Madrid on 11 March. My husband and I had gone there to celebrate his 58th birthday. That was on 10 March. It was also our 35th anniversary of getting together as a couple, so it was pretty special. We spent the evening with Spanish friends we’ve known since we lived and met in Madrid in the mid 1980s. The talk was of coronavirus but other than that Madrid was felt no different from usual and there was little sense of the huge upheaval that was to come.

Back to London. In the words of the oncologist, the PET CT scan results “gave with one hand and took with the other”.

Some previous “hot spots” were less hot than they were three months ago but there were some new hot spots elsewhere. As for the MRI scan of my spine, the conclusion was that despite there being “widespread metastatic disease”, appearances were “stable compared with previous”.

Things are still looking ok on the bone marrow function front. 

My view is that while “not bad news” is not good news, it’s a heck of a lot better than actual bad news. Also, I really can’t believe that with all this going on inside, I’m not in any pain. For that, I couldn’t be more grateful. 

I know this is all about me and that many people are in a far worse situation – and, of course, that there are many people out there in essential jobs who are themselves at great risk of getting the virus. However, it does illustrate perfectly how coronavirus has changed everything. And if we’re to believe the forecasts, we ain’t seen nothing yet. 

Long before most people had even heard of coronavirus, I wrote a long article about living with secondary breast cancer. Some friends read a draft and suggested I try to find a broader audience for it than I’d get with my blog. I approached the Institute of Cancer Research and they said they’d be happy to publish it.

In the article, I make the point that very often we make presumptions about the future when the reality is that we have no way of knowing what will in fact happen. Reading it now, it seems weirdly prophetic. 

The ICR published the piece on Mother’s Day. If you read it, you’ll see why they chose that day. It’s frank and honest right from the start. Please only read it if you think you’re ready for that. You can read it here.

*I take issue with the blanket assertion that home is the safest place for people to be in these times of lockdown and self-isolation. It may be for me but what about women in abusive relationships and/or at risk of domestic violence, not to mention children who live in very troubled households? I have relatives who are school teachers and they all know of children for whom school is their only safe place.

Ode to Kenny Rogers

Kenny Rogers, King of Country, has died at the age of 81.

I come from a big card-playing family and Rogers’s song The Gambler was something of an anthem for us. When I read that he’d died, of all of his songs that I know, that one came to mind first. It’s associated with so many happy memories.

My five brothers and I all learnt to play cards when we were small. I remember our lovely gran being there and playing with us (for many years my gran lived with us from Monday to Friday and helped looked after us so that my mum could go back to the teaching job she loved). We’d gamble using matchsticks and then two pence pieces – “coppers”, my gran would say. She was English; no-one in Glasgow used that word.

We kept playing as we got older, and we moved from coppers on to silver – and worse! Once we all started leaving home – and in some cases leaving Glasgow and Scotland – we’d make a real effort to arrange a card school at our parents’ house whenever we knew all six siblings were going to be back in Glasgow at the same time.

These card schools were always a big deal (see what I did there?).

My mum never played for money so it was always my dad, my five brothers and me.

Sometimes just the seven of us would gather. Or we’d play after big family gatherings such as at Christmas. On those occasions, anyone else who was around as things were about to get going would make themselves scarce.

My then partner (and now husband) and my sisters-in-law were more than happy to go. They were fine with the jokes and teasing and laughter but they couldn’t stand all the shouting and arguing that also went on as well. Fair enough. Any children that were there would be desperate to stay but were made to leave because we didn’t think it was right for them to see us gambling for money! There was the odd exception – like in the photo, when our younger boy as a baby had conjunctivitis and just wanted to be with his mummy. If I recall correctly, it didn’t occur to me not to play! I thought of that photo when I read some years ago that now writer, television presenter and poker player Victoria Coren Mitchell had learnt to play poker sitting on her grandad’s lap.

I was the wimp who would always fold first. I’d rarely win much because everyone knew that if I stayed in for long, it was because I had a good hand. I’d only manage to fool them on the odd occasion.

We’d play for hours. If we got too loud or it was getting very late, mum would bang on the bedroom floor upstairs. That would quiet us down for a bit then, as it got later, we’d hear it again, and again. Finally, at two or three – or sometimes four – in the morning, mum would come downstairs in her nightdress and say “it’s time you lot were all going to bed”. We’d play on for a while, and that would be it, until the next time.

I moved from Glasgow for good when I was 22 or 23 – first to Madrid, where I’d already previously spent two years, and then to London. I regularly went back home and in the early days I used to joke that it had been a good trip if I’d won the cost of the coach ticket at cards!

The Gambler was released in November 1979. I would have been 16 then, at secondary school, and I have no idea whether I know the song from then or from later. That really doesn’t matter. I only know that – along with many other country music classics (that’s Glasgow for you) – it’s part of my life’s soundtrack.

Like in the song, we learned never to count our money when we were sitting at the table. Some of us tried but every time someone started to stack their coins into piles of ten, someone else would reach over and knock them down – and then quote from the Kenny Rogers song. I found it so annoying at the time, but I did also see the funny side.

When I read that Rogers had died, my mind went racing back to all the card schools we’ve had over the years.

It also went back to this photo of us all, from just a few years ago.

I love this photo for so many different reasons. My dad died just a couple of months after it was taken. It was taken in November or December 2015. It’s one of the very last photos of all eight of us together and it’s just so appropriate that we’re playing cards. I love the fact that my mum’s in it. We must have persuaded her to come and sit at the table for a family shot. My dad’s not smiling but he never smiled in photos; it was a standing family joke.

There’s another reason I love this photo. I had only recently finished chemotherapy for the primary breast cancer I’d had and I was due to have to my big op just before Christmas. I must have gone up to Glasgow for a few days thinking that I wouldn’t be up for a good while after that.

It was such a happy occasion. I was wearing a wig. Underneath, I was completely bald. Not long before or not long after this photo was taken, we’d all been rolling around laughing as some of my more idiotic brothers and some of my younger nieces and nephews had been throwing the wig around and trying it on! We weren’t to know then that I’d be up again just over a month later for, as I wrote at the time, “the saddest of reasons”.

I honestly don’t remember but I can say with absolute certainty that this song would have been played at the get-together after my dad’s funeral. Here’s the chorus: “You gotta know when to hold ‘em, know when to fold ‘em, know when to walk away and know when to run. You never count your money when you’re sitting at at the table; there’ll be time enough for counting, when the dealing’s done.”

Good advice for life in general.

Thanks for the memories, Kenny. We’ll toast you the next time we play.