The busy business of living under lockdown

Another four weeks gone by, another round of treatment started.

Last Wednesday, I had the usual blood tests – plus a couple of additional ones that I have every so often. The following morning, I got the all-clear to go ahead with treatment in a phone call from the oncologist, so off I went to the hospital later that day.

I had my temperature taken and was given a face mask before I could enter the oncology day unit, which has been re-sited to a stand-alone building away from the main hospital buildings to reduce the risk of patients catching or spreading the coronavirus. I had my various injections (fulvestrant, denosumab and filgrastim), was given my next 28-day supply of abemaciclib tablets and an extra filgrastim injection to give myself mid-cycle to boost my white blood cell production and headed home again.

That’s cycle #13 under way with the core drugs I started on a year ago now. On 23 April, I passed the first anniversary of my unofficial diagnosis of metastatic breast cancer. Official confirmation came shortly after that the primary breast cancer that I’d been treated for almost four years earlier had spread to my bones (mainly my spine) and was also in my bone marrow.

There were a couple of changes but no big surprises on the blood test front. The relevant tumour marker has gone up as it has done every month since November. And while my red blood cell or haemoglobin level varies by the month, this time it had dropped to slightly below the normal range for the first time since September. It’s been going down since February or March. That unsettles me. I feel fine largely, but maybe that explains why my running has become little more than a brisk walk! I need some excuse so I’ll take that one.

During the phone call with the oncologist, I decided to take the opportunity to ask her to talk me through every possible drug treatment option from here on. She did, in great detail. It seemed like a good idea at the time but I spent much of the following day really out of sorts thinking about the enormity of it all. Plenty of good things happened that day but overall I would not describe it as a good day. Days like that are allowed every so often.

It’s been an eventful few weeks, despite lockdown.

For starters, I had a week off work. It’s been super busy and it was good to get some time off, especially so when it coincided with some fantastic weather here in my little part of south west London.

I read a couple of books. I got my summer clothes out and had a bit of a wardrobe clear-out. I polished four pairs of shoes that were sorely in need of cleaning and I replaced a pair of shoe laces that had needed replacing for at least a year. I prepped the garden for some plants I’m hoping will be delivered this week or next. I thought I’d mastered making flapjacks, but then promptly burnt the next batch.

I’m in the category that I’m terming “vulnerable but no longer shielding” – my oncologist said last month that she was happy for me to go out for exercise. I decided I could safely do socially distanced cycling, so in that week off I went for a couple of longish bike rides, through a beautiful and largely deserted central London. Being out on the bike felt very good indeed.

Over the past few weeks, I’ve also had a clear-out of my “memory box”, which in my case was a suitcase. It was a joyous thing to do and I highly recommend it.

There was the odd photo; not many though – the boxes and files of photos are  another thing entirely.

There were dozens and dozens of cards. Mother’s Day cards. Birthday cards. Christmas cards. Valentine’s Day cards. Wedding cards. Postcards from friends and family. Letters from old boyfriends. Dozens of cards and letters from my now husband. Wedding invitations. Orders of service from funerals. Letters from my brothers when they were away travelling, from Sri Lanka and Australia.The two cards I received from friends asking me to be godmother to their children.

There’s a letter from my late dad from when I was living in Spain in the mid 1980s. That’s one to keep – my dad never wrote. There’s also a cutting from a Spanish newspaper; it’s a photo of me on my now husband’s shoulders at a march in Madrid from around the same time (see below). Ticket stubs from dozens of concerts, going back to when I was in my final years at school the late 1970s. The ticket from my first flight. My first pay packet, from 40 years ago – four hours work in a grocer’s at 74p an hour. My first proper job offer in London. Exam certificates and indeed exam papers, that I couldn’t possibly answer now.

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Madrid, December 1984

There are also medals and certificates from various 10k runs and the odd half marathon done over the years. My fastest recorded time for a 10k run, in London in 1993 when I would have been 29 or 30, was just under 50 minutes. Not brilliant, but not bad. It would take me more than half an hour longer at my current speed.

I was brought up a catholic and there was also the certificate from my first holy communion when I was seven and the rosary beads I had as a child. It seems really strange to me now that I kept these. I’ve been lapsed for so long, but perhaps there’s something in the saying “once a catholic, always a catholic”.

I came across an English project from secondary school. I got an A*, which came with a comment of “very competent”. For an A*? That seems rather harsh. I don’t recall feeling anything other than pleased at the time but I’m outraged now! Surely an A* deserved very good, or even perhaps excellent.

And then there’s the certificate thanking me for having been a blood donor. I gave blood 22 times in the UK before a gastrointestinal complaint I had nearly ten years ago meant I could no longer donate. I remember being gutted at having to stop. I loved giving blood – it made me feel part of something bigger. I donated 23 times in total. My first donation was at a mobile unit that had pitched up at the campsite I was staying at in the south of France for the summer between first and second year at uni. The incentive was that they handed out free sandwiches after you’d donated. None of us there had much money so it was a no-brainer! As you can see, I have the certificate from that too.



I’d gone to France on the train from Glasgow with a friend from uni after seeing a notice for summer jobs on the student union notice board. We ended up selling apple donuts (no hole in the middle) and ice creams on a nudist beach for six weeks. It was an interesting experience to say the least. I’d turned 18 just days before I left for France and was still pretty naive – I was less so by the time I came back! 

I’m going to get on my high horse here and say that if you don’t give blood and there’s no medical reason preventing you from doing so, you need to have a word with yourself. Having a genuine phobia of needles also gets you off the hook but just being a bit nervous around needles or can’t be bothered really doesn’t cut it. Say you get sick and you need, for example, chemo or antibiotics via a drip, or indeed, a blood transfusion. Are you going to refuse on the grounds that you don’t like needles? No, I didn’t think so. Do it, it’s your civic duty. You won’t regret it. Incidentally, I’ve had all three procedures I mentioned. That’s incidental, though; I’ve always felt strongly about this.

Other things have happened.

Some exciting cycling plans I had for the summer have been scuppered, thanks to the coronavirus pandemic. My diagnosis last Spring meant I had to give up on plans to ride a few stages of the Tour de France a week before the real thing in July as part of a big fundraising event known as Le Loop. My heart therefore skipped a beat in December last year when they released the route of the 2020 tour and I saw there were going to be two back-to-back flat stages. Flat is not usually a word you associate with the tour, and my interest was piqued. Each stage was 100 miles but I was feeling much fitter than I thought I’d be. I mulled it over for a bit and decided that if I were still well and suitably fit come July, I’d go for it. I wouldn’t have to raise any money as the money I raised last year would roll over.

No-one knew of my plans other than my oncologist, my husband and two boys, and the lovely people at Le Loop. My plan was to crack on with the training – quietly and without any of the fanfare that accompanied my plans last year – then do the event, completing what I saw as unfinished business. Anyway, like many charitable events and so much else, this year’s Le Loop has been cancelled, having initially been moved to the end of August. It’s disappointing, but for me what matters is that I felt well enough to at least consider going for it. There may be a chance to do it next year, or there may not. There’s no need to think about that at present.

I heard someone say on the radio the other day that no matter how inconvenient things were for them under lockdown, they were very much aware that they “weren’t the victim here”. That resonates with me. Of course it gets you down and you fear for the future, but I can’t feel too sorry for myself. Too many people are losing loved ones and there’s too much real suffering going on. As for the fall-out of it all, we have no idea.

My family’s safe so far. My mum is in a care home in Glasgow. That’s a big worry in itself but to date thankfully the home has managed to stay cononavirus-free. I haven’t seen my mum since last November. That’s also tough, but we know she’s well cared for and we’re relieved she’s well. Those of my brothers who live locally pay regular visits and chat to mum from outside, through the window of her room on the ground floor.

Here in London, somewhat selfishly, my husband and I are relishing having our boys back home. They were both away at uni, in their first year and having fun, and while it’s only right that they’d much rather still be away, their very presence makes us happy. They probably find us as annoying as you’re meant to find your parents at that age, but I hope they’re at least feeling the love. They’ve reverted to pre-uni status whereby they spend a lot of time in their rooms, but supper together is sacrosanct (we all take turns at cooking) and we have carefully negotiated film dates. I am regularly woken up in the middle of the night by the smell of baking. I can’t complain when the result the following morning is freshly baked chocolate cake.

We’re being careful with hygiene in the house and while the boys do go out, they haven’t been able to consider getting jobs, for example, as they’re being careful not to put themselves at risk in light of my situation. We’ve just now started looking at potential less risky employment options for them.

My husband’s well. The boys are well. I’m well (apart from the obvious). I’m working, I can cycle, I can run (just), we live next to a lovely common, we’re in touch with lots of people and, very close to the top of the list if not at the very top, my treatment is unaffected. This isn’t the case for a lot of people.

Also recently, I had a call from the GP, asking me to arrange a care plan in case I catch Covid-19 and need to be hospitalised. It wasn’t a shock to have to think about this. I’ve already made my end-of-life preferences clear in the context of having a terminal illness. It’s written into the power of attorney document I arranged last year. If I’m in the final stages of breast cancer, I told the GP, I want to go quietly and gently, but if I get Covid-19, do whatever it takes to keep me alive. Everyone should have a care plan. No-one wants to think about their own death, but the point is to make things easier for your nearest and dearest at an already very difficult time – should the occasion arise.

It’s time for my next set of scans. It’s hard to believe it’s been nearly three months since the last lot. Over the next couple of weeks, I’ll have an MRI scan of my spine and a half-body (essentially from the top of my head to above the knee) combined PET CT scan to check for any disease progression. If they pick up what’s been causing the blood tumour marker to rise and there’s evidence the cancer’s spread beyond a certain point, we’ll be looking at moving on to the next appropriate line of treatment. That would be a big step. I’ll get the scan results when I next talk to – or possibly even see – the oncologist, at the end of April.

That’s more than three weeks away. That’s another three weeks to get on with the busy business of living.

Topping off a lovely few weeks with my 100th Parkrun

I’ve just done my 100th Parkrun and it was the perfect end to a lovely few weeks.

I started doing Parkrun seriously in April 2016 to get fit again after finishing active therapy for primary breast cancer. Little did I know then that these free, timed, volunteer-led Saturday morning 5k runs would become a big part of my life and that almost four years and two cancer diagnoses later, I’d be chasing down my 100th.

Reaching one hundred is a pretty big milestone in the Parkrun world. I couldn’t be more pleased, especially as at one point earlier this year, not long after I was diagnosed with secondary breast cancer, I genuinely thought my running days were over.

It really felt like a massive achievement. Others agreed. Friends turned up to cheer me round our local course at Tooting Common in southwest London with the banner they’d made when I cycled Ride London last summer. One friend ran the whole 5k with me. Another chose to make this her first Parkrun. Finally, there was a welcome party waiting for me with champagne, party poppers and cake!

It was the perfect end to what had been a very pleasant few weeks.

Just two days earlier, I’d gone ahead with the ninth monthly round of the treatment I began in May for secondary breast cancer. I’d had a wide range of blood tests the day before. It’s no longer as straightforward as saying that the results are showing good news across the board – the relevant tumour marker has edged up again. However, my oncologist clearly thinks the balance is still in favour of continuing with the same core medication I’ve been on since starting treatment last May. This is my first so-called “line of treatment” and the longer you can stay on these early lines – and off chemo – the better.

I’d been feeling good physically most of the way through the four weeks of treatment cycle #8 – apart from on one key front, more of which below. Feeling well, however, is no indication that things are going well inside. That being the case, together with the uncertainty of the past couple of months, it was a huge relief to hear I’d be staying on this treatment for another four-week cycle.

So off I headed to the day treatment unit for three lots of injections and to collect my next 28-day supply of the abemaciclib tablets that I take every morning and every evening.

Treatment at the day unit consisted of four individual injections: one of the same drug (fulvestrant) in each buttock lasting two to three minutes each, one of another drug in the left side of my abdomen (denosumab) that took about a minute, and a quick 30-second jab of yet another drug (filgrastim) on the right side of my abdomen to finish.

It’s not an exaggeration to say I felt like a pincushion by the time I was done. That’s not a complaint; it really is just a statement. They can stick as many needles as they want into me if it keeps the cancer in check.

It’s been the loveliest of Christmases and New Years – spent very sociably but also very locally. Our two boys started uni in September and it was great to have them home for a few weeks. A highlight was them treating us to a delicious home-made Beef Wellington on Boxing Day.

I’ve been having a lot of fun sports-wise. I was on a mission to reach my 100th Parkrun as early in the new year as possible. To achieve this, I did four Parkruns over a ten-day period – two regular Saturday runs at my home course and two special events, one on Christmas Day at Dulwich Park a couple of miles away and one on New Year’s Day, also at Tooting.

Also, I’m back playing in the tennis leagues at my club. Over the holidays I played – and lost – two singles matches.

Most fun of all, on New Year’s Day a friend and I took a dip in Tooting Lido, the local 100 x 33 yard open air swimming pool. Even with a full wetsuit, we managed no more than two widths – my hands and feet were frozen the second I got in. It felt like a suitably bonkers thing to do on the first day of a new decade.

Another positive relates to the issue of drug side effects. Severe diarrhoea is a potentially serious side of abemaciclib, one of the two drugs I’ve been on from the start. There had been moments but I hadn’t been too badly affected. That all changed with treatment cycle #7 just over two months ago when I switched from Zometa, the drug I’d been taking to reduce the risk of bone fractures and other “skeletal related events”, to denosumab, which is aimed at doing the same thing but in a different way.

If you’ve had bad attacks of the runs – and I mean really bad – you’ll know how nasty diarrhoea can be. If you haven’t, well just be grateful. The antidiarrhoeal medicine loperamide quickly became my new best friend. I can now boast of being an expert in its use – for both treatment and prophylactic purposes.

While it didn’t spoil our recent holiday in Jordan it was, as I said euphemistically to the oncologist, most certainly “an issue”. I could only look longingly at the all-you-could-eat breakfast buffet at the smart beachfront hotel where we stayed for the last two nights of the trip. That felt most unfair. Also, I bet I’m one of the very few people who know the location of all – and I mean all – the public conveniences in Petra.

Anyway, the good news is that this cycle so far I haven’t been troubled anywhere near the degree to which I was in the first two cycles. It’s usually at its worst in the first two weeks – and at its very worst in the first few days – of the four-week cycle. Fingers crossed things are settling down.

Finally, the charity Breast Cancer Now has chosen to feature on its website an update of a blog post of mine that I wrote originally last November after a lovely summer and a trip to the US to visit two much-loved aunts. The fact that it’s had lots of positive feedback from many, many women with breast cancer makes me very happy indeed.

As I said, it’s been a lovely few weeks. Indeed it’s ongoing. At a ridiculously early time tomorrow morning, I fly off to the French Alps for my annual ski trip with friends. I’ve stocked up on loperamide but I do feel very fortunate even to be in a position where I’m able to  go. It’s from Friday to Tuesday, and the aim is to ski on each of the five days we’re away. I call it a long weekend; my husband calls it a short week. He is technically correct, but don’t tell him I said that.

Here’s to 2020. Let’s hope it’s kind to all of us.

A half marathon and feeling grateful

There I was at 10am this morning, running along the banks of the River Thames in the freezing cold, trying desperately to focus on something other than 1) just how bitterly cold it was and 2) the residual peripheral neuropathy I have in the balls of my feet and toes that’s a side effect from the chemo I had as part of my breast cancer treatment well over two years ago.

Peripheral neuropathy is a horrible mix of numbness and pins and needles; I’m mostly just vaguely aware of it but it gets considerably worse 1) when I’m running and 2) when it’s cold. It’s worse on my right foot than on my left.

Bit of a double whammy on the foot front, I was thinking as I ran.

I was only a couple of miles into the 2018 Hampton Court Palace Half Marathon and I knew it was going to go badly if I didn’t manage to divert my thinking to something more positive. So I started thinking about all the people who’ve helped and supported me through what I can only call the shitstormy periods of the past two and three quarter years.

Don’t get me wrong, some of that time has been brilliant. In fact, quite a lot of it’s been brilliant, but some of it’s been pretty damn tough. But it would have a lot tougher without the amazing support I’ve had, from many, many different people. Thinking about all that cheered me up no end. I started writing it all down here but it was getting so long that I decided it deserved its own blog post.

So what’s gone down over the past (almost) three years? Diagnosed with Stage III breast cancer (Stage IV is treatable but ultimately terminal) in July 2015, followed by seven months of treatment involving chemo, mastectomy and lymph node removal, and radiotherapy. High risk of recurrence and many, many months post-treatment trying to find a way of transferring my fear of recurrence from the front of my mind to somewhere less harmful. It’s sometimes still an issue, in fact. [The Scottish comedian Billy Connolly helped recently on that front. He’s got Parkinson’s disease and I heard him say not too long ago that his condition is the first thing he thinks about every morning when he wakes up so he makes sure his second thought is something nice. I bear that in mind when I feel that fear of recurrence creeping back.] Then, late last summer, just as I felt I was really moving on, I was diagnosed with malignant melanoma. Thankfully it was very early stage, but it involved two rounds of surgery to my right calf which amounted to several months of enforced inactivity.

Back to this morning’s run. Having spent an uplifting however long thinking how fortunate I was, I then focused on the fact that I was able to even contemplate doing this half marathon was cause for celebration. The wound from the surgery I had on my calf at the end of November had healed so well that I was able to start running again in mid-January.

There are a lot of people to thank for a lot of things, as you’ll be able to read when I get round to writing them all down. Special thanks, however, goes to my husband Andy, who surpassed himself today – as he has done so on so many occasions over the past few years. Not only did he drive me to Hampton Court Palace this morning at 7.45am, he also came to pick me up at the train station on the way home –  with a flask of steaming hot soup. I can’t describe how welcome that was. To give you some idea of just how cold it was, it took me 20 minutes after I’d finished the half marathon before I had enough feeling in my fingers to be able to use my phone.

Andy would have been to cheer me over the finish line too but I’d said I didn’t want that.

As everyone will know, the brilliant astrophysicist Stephen Hawking died this week at the age of 76. He’d been diagnosed with a rare form of motor neurone disease as a young adult and was told he’d be dead in a couple of years. He’s quoted as saying: “My expectations were reduced to zero when I was 21. Everything since then has been a bonus.”

I was 52 when I was diagnosed with breast cancer. My expectations were far from reduced to zero, and not everything since then has been a bonus. I’m pretty sure it wasn’t for Stephen Hawking either after his initial diagnosis. Having run a good part of 13.1 miles this morning contemplating the good things in my life, though, I know where he was coming from.