Moving to oral chemo: different treatment, different approach, fingers crossed

It was pretty clear to me even before I got my latest blood test and scan results that I’d got as much benefit as I was going to get from the treatment I was on for advanced breast cancer. I more or less knew that when I had my next meeting with the oncologist, I’d be moving to a new treatment.

That was indeed what happened. On direction from the oncologist when we met at the end of May, I agreed to stop the treatment I’d been on since I was diagnosed a little over a year ago, skip the next possible treatment and move on to an oral chemotherapy drug called capecitabine. The treatment I’d been on didn’t involve chemo.

A change had been on the cards and while it’s disappointing to know that one’s exhausted the first in a finite number of potential treatments, at least it wasn’t a surprise or a shock. 

This new treatment is in tablet form. IMG_20200528_183239668

You take it orally but it’s still chemo, as you’re reminded by the yellow warning sticker on the box the tablets come in telling you that the contents are cytotoxic and should be “handled with care“.

On to the rationale for moving on to capecitabine, which is also known by its brand name Xeloda. 

Well, there is no sign of any cancer outside of my bones and nor is there any sign that the cancer that’s in my spine is pressing on my spinal cord, where it could do serious damage – positives among the negatives. Things have progressed, though. There are new “skeletal lesions” in certain areas including in my pelvis and sacrum and in my right hip and left collarbone. In addition, my bone marrow is “more infiltrated”.

There are two aspects to my disease. The breast cancer for which I was originally treated for in 2015/16 has spread, or metastasised, to my bones. “Bone mets” weakens your bones and this in turn increases the risk of fracture among other things. It can also cause immense pain. As if that weren’t enough, the breast cancer has also “infiltrated” my bone marrow and so reduces my body’s ability to make healthy blood. Both aspects need to be managed in parallel. 

We’d known for months there was increasing cancer activity. Monthly blood tests had shown that levels of the relevant breast tumour marker (CA 15-3) had been rising since November. My bone marrow function remained stable, though, and rising tumour markers weren’t enough on their own to prompt a change of treatment. Also, the scans I’d had in November and February hadn’t picked up any meaningful or actionable change.

More recently, though, the blood test results overall had been showing a “continued though minor deterioration”. Among other things, my haemoglobin level had been falling. Despite this, I’d been feeling fine but over the past couple of months I’d become increasingly aware that certain physical exertions were leaving me breathless or were becoming too hard even to do.

So even before I got the results from the scans I had in mid-May, I knew things had changed. This time round, to no-one’s surprise, there was something to see.

Bone mets is hard to measure radiologically but there was enough change in the combined near full-body PET CT scan that I had compared to previous scans to be able to say for the first time that things were worse. According to the official report, “The interval change within the skeletal lesions in particular within the pelvis raises suspicion of disease progression.”

I’m in no pain so all this is happening without my having any awareness of it.

As for the MRI scan I had of my spine, “The pattern of marrow infiltration appears to be slightly more diffuse than previously and is concerning for progression.” It also confirmed “extensive metastatic disease throughout the visualised spine and sacrum.”

The blood tests confirmed that the tumour marker is still rising and that my haemoglobin level had indeed continued to fall. The former is not yet at the high level it was at when I was diagnosed in April 2019 although given the rate at which it’s been rising, it’d be there in a couple of months. As for the haemoglobin level, it’s near to what it was when, this time last year, the oncologist started discussing the potential need for a blood transfusion – which I subsequently had.

The results regarding the haemoglobin didn’t surprise me. Most obviously, just briskly walking up the two flights of stairs in our house to the loo had been leaving me breathless. (We’re lucky enough to have two bathrooms. At the moment, while we’re in pandemic mode, the one in the loft extension has been designated for my sole use.) 

Also, I’m playing tennis now that the courts are open and, while I love it, those explosive movements you make all the time have my poor heart pounding. FB_IMG_1591398352510As for running, I’ve more or less given up as I can’t even run fast enough to break a sweat.

Cycling is absolutely fine – you go at your own pace, you can stop and start when you want – and I’ve been doing plenty of that. The photo on the right was taken at the top of Reigate Hill in Surrey, half-way through a hilly, 40-mile ride with my husband a few days after moving on to chemo.

When I started treatment last May with abemaciclib (Verzenios) and fulvestrant (Faslodex), I was one of the first people in my situation to be put on this new combination at the hospital in southwest London where I’m being treated.

The most obvious next treatment was what I’d have been given had the abemaciclib/fulvestrant combination not been available then – a combination of two drugs called everolimus (Afinitor) and exemestane (Aromasin). While everolimus is also oral chemo, the combination is aimed at doing much the same thing as the drugs I’d been on, both over the past year and in the three years between finishing active treatment for primary breast cancer and being diagnosed with secondary – that is, stopping my cancer one way or another from getting the oestrogen it needs to grow. Capecitabine uses a different approach.

There was no reason to suggest the everolimus and exemestane combination wouldn’t work so I understand why the oncologist said things weren’t straightforward. However, to paraphrase in an extremely liberal way, I think her bottom-line recommendation was “let’s not faff about with more of the same and see instead if we can get a quick response with capecitabine”.

Depending on how things go, I could go back and try the treatment I’m skipping. Clearly at this stage I have no idea how likely that is but it is good to know.

With capecitabine, it’s a three-week cycle initially; two weeks on the tablets and one week off, with blood tests at the end of each three-week period. It can take time to find to right dosage.

If I tolerate capecitabine ok and it keeps things in check (remember we have the cancer in the bones and in the bone marrow to worry about), I’ll be on it for as long as it keeps working. Whether that’ll be weeks, months or years, we don’t know. It’ll be at least nine weeks before I have a scan to determine what effect it might be having. In the meantime, the regular blood tests that I’ll be having will give us some idea.

Also in the meantime, I continue with the four-weekly injections of the bone-strengthening drug denosumab at the day treatment unit.

My appointment with the oncologist – in-person, with masks – was on the last Thursday in May. I started on capecitabine the very next day. Having seen the way things were going, the oncologist had me tested a couple of months ago to see if I was in the group of people whose bodies are unable to metabolise capecitabine and would be likely to develop very severe side effects. I wasn’t. It’s strange what you become thankful for.

I was forced to make lifestyle changes from Day 1. For years on weekdays I’ve rarely eaten anything before 11am. However, I need to take these new tablets twice a day, at more or less 12 hours apart, within half an hour of eating. Given we have supper at about 8pm, I have to have had something to eat by around 9am. That really is not me but it’s amazing how quickly you adapt when you have no choice.

For breakfast on the first day, I had stewed prunes and yoghurt – a strange choice given that one of the very common side effects of capecitabine is diarrhoea. On that particular day, though, there happened to be some prunes in the fridge and, since I’m the only one in the family who likes them, I couldn’t let them go to waste. In fact, more than simply disliking them, my long-suffering husband can’t stand the smell of either prunes or yoghurt and refuses to be in the kitchen when I’m eating them! I usually drizzle some warm honey on top but he still can’t bear it.

The second day, a Saturday, I had a poached egg on toast. If I’m going to be forced to have an early breakfast, I decided, it may as well be nice. My resolve has petered out already, however; now I have a quick slice of toast and marmalade or jam, some fruit and a cup of tea, and I’m done.

Capecitabine can cause many of the same horrible side effects as other chemo drugs that are given via infusion. However, it works in a more targeted way compared with regular chemo and some of the standard side effects can be less severe. For good measure, though, there are some additional side effects that are specific to capecitabine.

On the hair front, I’ve been told to expect thinning but not loss. That’s something. I really wouldn’t have thought my hair could get much thinner than it is already but I guess I’m about to be proved wrong.

One of the more common side effects – that I’m looking out for and dreading getting – is palmar-plantar, or hand-feet, syndrome. IMG-20200528-WA0002With this, the palms of your hands and the soles of your feet can become red and  dry and flaky and sore and numb and swollen. It sounds horrendous and some people get it really badly. No-one needs that but for someone who plays tennis and cycles, it seems particularly cruel. I have already started moisturising my feet morning and evening in anticipation.

Exhausting one treatment and moving on to another is quite a sobering milestone psychologically.

Physically, ten days in on cycle #1 and I’m feeling fine. I wanted to write and post this before any side effects rear their ugly head. Once again, we can but hope for the best and see how it all goes.

Chocolate deliveries, bike rides, giraffes and scans

I have taken delivery of not one but two substantial amounts of chocolate over the past week or so.

How so?

I posted on facebook that I’d had to enlist our elder son to buy me some chocolate because my husband, who’s doing the shopping at the moment, eats too healthily and it just doesn’t occur to him to chuck a couple of chocolate bars in the trolley as he makes his way round the supermarket. It took a while, but at least now he does deign to bring home as standard a couple of packets of biscuits – but still no chocolate bars. 

Now I’m no addict, but I do have the odd bar on an ad hoc basis. However, I can’t currently indulge that habit while we’re in the midst of this coronavirus pandemic. My immunity is low as a result of the anti-cancer treatment I’m on and while I do go outside quite a lot now for walks and to exercise, I generally tend to not to go into shops. So no impulse buying of chocolate bars for me!

The photo I posted of me looking gleeful holding the bars my son brought back for me made a lot of people laugh and sympathise.

A couple of chocolate-loving friends – a huge thank you again, you know who you are! – were clearly feeling my pain to such an extent that they took things a step further and actually sent me supplies. We haven’t laughed so much in ages. My husband says he’s going to post that he’s got a craving for beer.

As you can see from the photo, I am now spoilt for choice. And that’s just one box.

I’ve given some away, the boys and I have been partaking, and the rest are “hidden for safe-keeping”, if you get my meaning. 

On the micro level things are still going largely fine on the lockdown front.

There are the chocolate deliveries for a start. Also, I’ve got most of this week off work and the weather is glorious. The roses in our garden have started blooming; they are gorgeous and there are dozens and dozens of buds, so it’ll only get more and more beautiful. Don’t look too closely or you’ll see all the aphids.

Yesterday I went out for a bike ride with a friend that involved seeking out and tackling the not insubstantial hills of south-east London, around Crystal Palace. There was blazing sunshine, there’s still far less traffic than there normally would be, and we enjoyed some incredible views over central London from the tops of the hills. 

We slogged up a fair few hills (with my friend overtaking me every time) and were rewarded with some lovely descents (with me doing the overtaking here). Before heading home, we bought some take-away coffee and chilled soft drinks and drank them in the welcome shade of a tree in Dulwich Park. It felt like we were genuinely on holiday.

On another bike ride, this time with my husband, we cycled past London Zoo in Regent’s Park and were delighted to see that the giraffes had come out for a stroll. There are two and there’s a sign there with their names on (I’ve forgotten their names*). Like everything else, the zoo is closed but we shouted over the gate and asked the zookeepers in attendance which was which. We don’t know, they told us excitedly, we’re from the other side of the zoo and don’t often get to see the giraffes. Their excitement was lovely to see.

On yet another ride into central London, we enjoyed great views of the river.

Those clear skies are good to see but they’ve come at a dreadful human and economic cost. We must never forget that.

Part of the reason I took time off work this week was that I was already taking time off to have scans. It’s that time again. I had a half-body PET CT scan this morning and tomorrow I’ll have an MRI scan of my spine. Both tests are to check to see whether there’s been any meaningful spread of the metastatic breast cancer I was diagnosed with just over a year ago. If there has been, we’ll be moving on to the next appropriate line of treatment.

I tell myself that I don’t generally get what’s known as “scanxiety”, ie worrying in the run-up to having the scans themselves and then again while you wait for the results (a week in this case). However, I really don’t think you can avoid it entirely.

You think it’s all fine then you realise you’re more argumentative at home than usual – and as those of you who know me are well aware, I’m pretty darn argumentative at the best of times. Or you’ll catch yourself doing too much forward thinking, dwelling on things you usually manage not to think about. Realising I’m doing this is usually enough to bring me back to the present. You just find yourself doing it more often than usual around scan time.

In this particular present, there’s a hedge that’s needs trimming out front. And afterwards, of course, there’s chocolate to be had as a reward!

* The giraffes are called Molly and Maggie, London Zoo told me in a reply to my tweet asking what their names were! I love Twitter when it works like that. Thanks to London Zoo for the reply!

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.

When buying new ski gear is an act of defiance

I’d resisted buying new ski gear for years but last week I finally succumbed. I blame Storm Ciara and cancelled flights – and a sudden, enlightening realisation that while I might have advanced cancer, it’s up to me how I choose to live with it.

My old ski outfit had become something of a standing joke. Not only was it very much past its best and dangerously close to being not fit for purpose, I’d lost lots of weight in the past few years and it was now far too big for me.

There were various reasons I hadn’t already replaced it. A key one was that a few years ago I essentially stopped buying stuff I didn’t need. This year there was an additional reason. Last April, I found out that the primary breast cancer I’d been treated for in 2015/16 had spread to my bones and bone marrow and could not now be cured. It’s treatable and I’m doing well but ultimately it’s incurable. 

After my diagnosis last April, I assumed I wouldn’t go skiing again. When I realised I would in fact go this year, I convinced myself I shouldn’t buy new gear because I might get only one season’s use out of it. To be honest, the thought that my cancer might recur was always in the back of my mind in previous years – another reason I couldn’t bring myself to buy new kit.  In the end, last week, I bought new trousers and a jacket in what I can only describe as a major act of defiance against the fact I have this cancer.

I’d had my old ski trousers for at least 15 years. They’d long lost any claim to being waterproof and indeed for the past couple of years had offered very little protection against the wind. The jacket was in fact a hiking jacket with none of the niceties that make a ski jacket a ski jacket. These include a little pouch on the sleeve for your lift pass – and, more importantly, inner cuffs in the sleeves and a “snow skirt” inside the body of the jacket to stop the white stuff going right up the inside should you fall. I say more importantly as I tend to fall, at least once every trip.

I’m extremely fortunate that, in normal circumstances, I get to go on more than one trip a year. I went with friends a few weeks ago and I’ve just got back from a week with my husband – our first ski trip together without the children in 19 years.

Not exactly flattering.

Having seen a photo of me on the trip with my friends where even I have to admit I look like a bag lady without the bags, I was almost persuaded. The photo’s there; see for yourself. In the end, though, even that wasn’t enough.

I read an article a couple of years ago about consumerism by the American author Ann Patchet. I was never that materialistic to start with; even so, this article changed the way I live my life. I’ve also just read a book by Vicky Silverthorn called “Start with your sock drawer”. If you read either or both and like what they say, you’ll appreciate my reluctance to buy anything new, never mind kit you only wear once or twice a year. Having this cancer adds another huge dimension. “How much use will I get out of it?” and “Do I really need  I it?” are questions I ask myself every time I think I might buy something new. On balance, I felt I couldn’t justify new ski gear.

So when I packed last Saturday to come away with my husband, it was my old gear that I folded into the suitcase. Our flight from Gatwick to Geneva was the following day, at around lunchtime.

And then Storm Ciara happened. First thing last Sunday we found out our flight was cancelled. Over breakfast while we tried to reschedule our flight for the following day, I had an epiphany. That’s it, I announced, I’m getting some new ski gear this afternoon. And that’s exactly what I did.

The miracle is that I’ve gone skiing at all this season. When I got my secondary cancer diagnosis last April, I thought I’d be kissing goodbye to this particular activity. When you hear you have cancer in your spine, you don’t think, great, that’ll set me up nicely for  skiing.

The closer it got to the ski season, however, the more I found myself thinking I might be able to go.

I did a thorough risk assessment before booking anything.

I hadn’t had any pain in my spine or anywhere else for months. I was feeling fit and well. Despite an initial scare towards the end of last year, an MRI scan failed to find any sign that my cancer had progressed. I was taking bone-strengthening drugs as part of my treatment. Finally – and this final factor was given extra weighting – I just really wanted to go!

I promised myself that if I did go, I’d be really careful. Sure, I might still have a catastrophic accident but I ride my bike downhill at speeds most people would think were fast and no-one is suggesting I don’t do that. And, as we all know, any one of us could get hit by a bus tomorrow. It’s highly unlikely, but you know what I mean.

On to treatment.

Between one ski trip and the next, I had my monthly blood tests and appointment with the oncologist. I went ahead with the tenth round of the monthly treatment I began last May. The blood test results were good enough to keep me on this treatment but that blasted blood tumour marker keeps going up. This means there’s active cancer somewhere, but at the moment we don’t know where that is. I have my next set of scans – MRI and PET-CT – this coming week and they may or may not pick something up. The results will determine whether I stay on this treatment or move to another.

That’s more like it!

I’ve said this before, if you think scans and other types of diagnostic tests are “just to check everything’s ok”, you’re very much mistaken. It’s the total opposite; they’re to see if they can find anything wrong.

Back to the new ski gear. No, it doesn’t make me ski better* but I feel like a total badass wearing it.

I have so little control over what’s going on in terms of this disease – most importantly in terms of how it will progress but also in terms of the appointments and the blood tests and the scans and the treatments. This wasn’t just about buying a new jacket and trousers. It was about taking control and confronting my fear about the future. I’ve done just five days’ skiing in my new kit. I’ve already had more than my money’s worth.

*That’s a nod to my brothers. We come from a sporty family and even now, when someone shows off a new piece of, say, cycling kit they’ve just bought, someone else is always quick to ask if it makes them pedal faster. 

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.

Relax, honey, you’ve passed

This post is in praise of the man who is still making me laugh after some 35 years of partnership.

My previous post was about how a diagnosis of an incurable, progressive, disease gives you an opportunity to reflect on life. Well, this is me reflecting on my relationship with my husband and best friend.

Like any couple who’ve been together for a long time, we sometimes drive each other nuts and bicker over silly things (or is that just us?). On our recent trip to Jordan, we’re wandering round the incredible Roman ruins of Jerash in the north of the country, and I jokingly tell him off for some ridiculously minor infraction.

Jerash

In response, he quips that sometimes he feels he’s still on probation. He smilingly says he’s worried that one day he’ll find out he’s failed and I’ll tell him, as we say in my native city of Glasgow, to “sling his hook”.

This has me doubled over laughing. It makes me laugh every time I think back on it.

We’ve been together essentially since we were 21. We survived living in different cities and indeed in different countries for several years early on. We got married two children and 20 years into the relationship – almost 16 years ago – and he was the one who joked in his speech at the wedding that it had taken him nearly two decades to be sure he’d made the right choice!

The idea that I’ve yet to decide whether he makes the grade is hilarious. As he knows very well. At least I think he does. Just in case, though, I’d like to say for the record that this man who is still making me laugh out loud 35 years on has indeed passed his probation. What’s more, he’s done so with flying colours and deserves the highest distinction going.

Reading Unsheltered in the Dead Sea

Part of the trick to a long relationship is being willing to say sorry quickly after a falling out. It has to be said that it took both of us some time to learn this – and I confess it took me longer than it took him. On holiday, I read Barbara Kingsolver’s latest novel, Unsheltered. In it, one of the main characters says that sorry really is “the word that could never be said enough in the space of one marriage.” I think most people would agree.

Now bear with me on this next part, there is a point to it.

Recently, I’ve increasingly taken to making sure my boobs look level when I’m wearing tight-fitting clothes. When I had my right-side mastectomy in December 2015, I had a reconstruction made out of fat taken from my belly area. The radiotherapy I subsequently had robbed the reconstruction of its elasticity – it’s a known risk – with the result that the right one looks pretty much the same now as it did four years ago and the other one, ie the real one, well, doesn’t. Nature, shall we say, has taken its course. (You are allowed to laugh; we do.)

These days, therefore, it takes some readjusting when I get dressed to get that sought-after “in-bra symmetry” look.

That photo!

Anyway, back to Jordan. It’s late afternoon and we’re wandering through the spectacular archeological sandstone site of Petra. The light is beautiful. He takes a photo of me at the entrance to a cavernous tomb. “That’s lovely,” he says, “I’ll post that.” It’s a close-up, and it’s going on social media. I ask, almost instinctively, “What do my boobs look like?”

What I mean, of course, is do they look lopsided or uneven in the photo? He, very deliberately, looks at my actual chest and replies with a smile, “under the circumstances, not half bad”. We both know what he means and, again, it has me laughing for ages.

I could have kept all this to myself. Shortly after our holiday, however, I happen to find myself listening to the first album in 17 years from Tanya Ticker, one of my favourite country singers from back in the day. There’s a song on it called Bring my flowers now (while I’m livin’).

You may not know this, but I am a huge country music fan. With song titles like that, how could you not be?

Anyway, the song is basically about how if you’re fortunate enough to have people in your life that you cherish, you should let them know that you appreciate them while you have the chance. Because guess what, folks, as Tanya Tucker tells us in the song, “We all think we got the time until we don’t.”

She sings: “Bring my flowers now while I’m livin’. I won’t need your love when I’m gone. Don’t spend time, tears and money on my old breathless body. If your heart is in them flowers, bring ‘em on.” Fantastically schmaltzy, even for country, but a great sentiment. You don’t have to be a rocket scientist to see how those lines hit a massive chord with me.

I’m the one with the incurable illness – secondary breast cancer – and you might think that my drawing attention to this song is to encourage those people who cherish me to let me know they do. In that regard, any of you reading this are indeed very welcome to “bring my flowers now” whenever and in whatever way you want. This post, though, is for my partner, who reckons that under the circumstances, we’re doing not half bad. I couldn’t have put it better myself. This is me bringing him his flowers now. I’m lucky to have him.

Thoughts on dying… and living

There have been two high-profile deaths in recent weeks of UK celebrities where the individuals involved have died in very different ways. I’m trying to work out whether I think one way is preferable to the other.

In the first case, Gary Rhodes, a British celebrity chef, died very suddenly in Dubai, where he had business interests. He reportedly died of a subdural haematoma, otherwise known as a bleed on the brain. The point is that one minute everything was completely normal then a couple of hours later he was dead. He was 59. I’m 56.

The second case involves Clive James, a well-known author and broadcaster. He died at the age of 80, nearly a decade after he was diagnosed with incurable leukaemia. He’d expected to die much sooner and, in 2015, he admitted to feeling embarrassed at still being alive.

I used to think that dying suddenly – of natural causes, at a decent age – would by far be the best way to go. Much better, say, than after a long illness where for a long time you have a very poor quality of life. Naively, I only ever considered these two possibilities. The situation in which I now find myself – living with an incurable, life-shortening disease with a prognosis that’s in single figures but currently with a good quality of life – never came into it.

I say naively because, as Dr Leslie Blackhall says in a thoughtful TEDx Talk, a great many of us who are over 40 are going to die of chronic, progressive and incurable illnesses such as metastatic cancer, emphysema, congestive heart failure, cirrhosis or dementia.*

Anyway, what do I think now?

Well, it’s harder to answer than you might think. But I’m starting to think that dying suddenly is no longer as appealing as I once thought.

What my diagnosis of secondary breast cancer has done is allow me to reflect on things in a way that I think is only possible for someone who knows with complete certainty that her or his life is going to be cut short. It’s an incredibly hard piece of knowledge to live with but, over the seven or eight months since I was diagnosed, I have come round to thinking that, in some strange way, it’s something of a privilege.

I am not in any way saying I consider cancer to be a gift. I don’t and I want to be absolutely clear on that. For my family’s and friends’ sakes more than mine, I wish with all my heart that this were not happening. I’d much rather be carrying on oblivious. But I don’t have that option. What I do have is a clarity about life and living that – and I accept I may be wrong here – I wouldn’t think is possible to have under normal circumstances.

The only thing any of us really knows with any certainty is that at some point we’ll die, but it’s the one thing, for obvious reasons, we don’t talk about. I’m not facing anything that the rest of us won’t ultimately face. Among the chaos and sadness that my diagnosis has brought, I find that fact strangely calming.

It is, of course, entirely possible I will outlive some of the normal, healthy people I come across every day in all sorts of different situations. Sudden, unexpected deaths do happen, as we’ve seen with Gary Rhodes – not to mention the recent, awful killings on London Bridge. Also, I may not die of this cancer. Something else entirely could carry me off before that does. There are no guarantees on anything when it comes to life – except that at some point we’ll die. Remembering all these things helps to keep me grounded.

Finally, my diagnosis has given me an outlet for my writing. That’s something for which I have to be grateful. I write for a living but it’s only since getting my initial cancer diagnosis that I’ve written in my own time.

I write but I’m not a poet, and these beautiful words by Clive James just blow me away. They’re the final lines of his poem Event Horizon:

What is it worth, then, this insane last phase
When everything about you goes downhill?
This much: you get to see the cosmos blaze
And feel its grandeur, even against your will,
As it reminds you, just by being there,
That it is here we live, or else nowhere.

“You get to see the cosmos blaze and feel its grandeur.” Isn’t that just magnificent?

For me, the most difficult thing is the uncertainty of it all. But then none of us has any real idea of when our own “last insane phase” will be – or indeed whether we’ll have one at all or whether, like Gary Rhodes, we’ll come to our end unexpectedly and suddenly. With me, we do at least know that it’s highly improbable I’ll be here in ten years’ time, still banging on about my situation and, like Clive James, feeling embarrassed at having survived for so long.

If I am still around though, I’m sure no-one will mind too much.

On that note, Happy Christmas, everyone. Here’s to a 2020 filled with peace, love and adventures!

*I urge you to listen to the TEDx Talk by this palliative care doctor, on Living, dying and the problem with hope. Here’s the link:

https://m.youtube.com/watch?v=KQEWc3LVfyc

Dodging a bullet

I feel like I’ve dodged a bullet.

Yesterday I had my monthly appointment with the oncologist and I got the results of the MRI scan I had on November 20th. That scan was prompted by the fact that the PET- CT scan I had had earlier that month had shown there had been some growth in the cancer that’s in my spine.

If this was confirmed by the MRI, there was a possibility I might need radiotherapy to shrink the tumour if it was seen to be getting too close to my spinal cord, where it could do some serious damage if left untreated.

I also got the results of the blood tests I’d had the previous day. Those results, combined with the scan results, would likely determine whether we needed to call a halt to the drugs I’m on and move on to the next line of treatment. That would have been very disappointing as things had seemed to be going so well. Obviously the longer you can stay on these early lines of treatment, the better.

Anyway, it turns out from the MRI scan results that, despite the “flare” highlighted on the PET-CT scan, there is “no strong evidence to suggest that there is disease progression”.

The results also confirm the “ongoing treatment response” on the bone marrow front. (The breast cancer I was treated for in 2015/16 has spread to my bones and bone marrow.)

Based on the MRI scan results and the blood test results, I went ahead yesterday afternoon with treatment cycle #8: the fulvestrant buttock injections, an injection in the stomach of denosumab*, and off home with the latest 28-day pack of abemaciclib tablets. The important tumour marker (CA 15-3) is up again but that in itself is not enough to come off this treatment. There’s stuff going on with my kidneys that could partly account for the rise. Importantly, my bone marrow function continues to improve – to the extent that this cycle I’ve not to give myself the injection of filgrastim, the white blood cell booster.

So no progression. No radiotherapy needed. Core treatment unchanged for one more month. A bullet dodged, whether for four weeks or longer we can’t know at this stage.

We still need to keep a very close eye on things. I see the consultant again in a month’s time and I’m to have repeat PET-CT and MRI scans early in the New Year.

So it’s still very much one month at a time but it’s nice that this particular month includes Christmas. We’re taking nothing for granted but this is an unexpected and welcome early present. We’ll accept it and be grateful.

*Denosumab is a bone-strengthening drug for the prevention of skeletal related events such as fracture, radiotherapy or surgery to the bone, or spinal cord compression. It’s given as a subcutaneous injection whereas Zometa, the bone hardener I was on previously, is given as an intravenous infusion like chemo. This means treatment now takes much less time – and I don’t have to go through the trauma of having a cannula inserted and being hooked up to a drip.

Getting an incurable cancer diagnosis is not “a relief”

I’ve heard reports of people who’ve had cancer saying it came as a relief when they were told – perhaps many years after their initial treatment – that their original cancer had come back and was now incurable.

The reasoning behind this sentiment is that some people have such a bad time worrying that they might suffer a recurrence that when it actually happens, they’re relieved as it means they can at last stop worrying about it.

I don’t know if the accounts are true. As someone recently diagnosed with metastatic cancer, I really hope they’re not. It’d be too sad if they were.

Not everyone suffers from it, but fear of recurrence after you’ve been treated for primary cancer is totally normal. As everyone reading my blog should know, it’s broadly true that once cancer spreads beyond its original site, it can no longer be cured. Secondary cancer can be treated and held at bay for a certain length of time but you won’t get better. For as long as you are alive, you will be living with incurable cancer and everything that entails – psychological as well as physical. You’ll die of it or at the very least with it. So of course you’d be scared it might happen.

However, if your anxiety is so bad that you genuinely feel you’d be relieved to be told you have incurable cancer, I would urge you please to seek help. Actor Kathy Bates told a major cancer conference recently that “life after cancer is a precious gift”. If your anxiety around fear of recurrence is preventing you from seeing that, you owe it to yourself to do something about it.

So-called cancer survivors – I never liked that term – talk about “waiting for the other shoe to drop”. That’s the feeling that at some point down the line – five, 10, 20 (or in my case just over three) years – you’ll be told your cancer has come back and can’t be cured. I completely understand the waiting-for-the-other-shoe analogy, but fear of recurrence shouldn’t prevent you from enjoying the currently “no-evidence-of-disease” life you do have.

Let’s be frank. With metastatic cancer or “mets”, the issue is how much longer you’re going to be alive. With fear of recurrence, regardless of your risk, you’re worrying about something that might never happen.

After my treatment for primary breast cancer ended, I never suffered from “survivor’s guilt”, that feeling that some people have at having survived a life-threatening event that has taken and continues to take the lives of so many others. However, I suffered very badly from fear of recurrence. For a while I could think of little else. I wrote about it extensively. Eventually, I sought help.

As I’ve written before, I realised that if my breast cancer did come back, I’d far prefer to look back and see I’d made the most of the “in between” time than to look back and regret that I’d spent that time worrying. I went on two courses, run by two breast cancer support organisations, Breast Cancer Care and The Haven. I learned strategies for coping with anxiety that I still find invaluable. I also talked to a counsellor. I learned to stop worrying. If that hadn’t worked, the next stop would have been my GP.

“Moving forward” after your initial treatment has finished is not easy, but you have to try. While it’s totally normal to go through a period or periods of anxiety, it shouldn’t be a permanent state of affairs.

There’s a saying that no-one on their death bed looks back and wishes they’d spent more time in the office. I think it’s the same here. Surely no-one diagnosed with incurable cancer – or indeed any life-limiting illness – looks back and wishes they’d spent more time worrying that one day the event they were dreading might in fact happen.

Grounds for optimism and a fantastic bike ride

Today I started my fourth 28-day cycle of treatment for the metastatic breast cancer with which I was diagnosed in April.

I appear to be responding well to the combination of drugs that I’m on. The blood test results I got yesterday in advance of treatment today were all encouraging. They showed that everything that needs to be down is down – including the all-important breast cancer tumour marker – and everything that needs to be up – including my haemoglobin level and white blood cell count – is up. Also, I continue to be totally pain free.

I no longer take anything for granted. I know things can change quickly in this game but there are grounds to believe that this treatment might keep the cancer in check for a good while. The awful thing about the beast that is advanced breast cancer is that you can never tell how long “a good while” might be. That said, there’s no doubting that we’re in as good a place as we could optimistically expect to be at this particular point.

The breast cancer I was treated for in 2015/16 has spread to my bones and bone marrow.

The implication on the haemoglobin and neutrophil front from these latest blood test results is that my bone marrow is under less stress due to the action of the drugs on the cancer. The debilitating pain I had in my right hip vanished long ago and may not even have been cancer. On top of all that, there is now the possibility that what we thought was cancer in a lower vertebra and was causing intense pain initially may also not have been. So the focus is on my bone marrow and on two vertebrae in my upper spine.

All things going well, as with the last cycle I won’t see the consultant for the whole of this cycle. And I’m down from two to one mid-cycle injections of filgrastim, the white blood cell booster. Also, with advanced breast cancer you have periodic PET-CT scans to determine whether the cancer has spread. Given the blood test results and the fact that I’m in no pain means we’re delaying my first repeat scan by a couple of months.

It’s been a great four weeks. We’ve had a lovely holiday in Spain*. Our two boys got their first-choice accommodation at the universities they’ll be heading off to in September. I’ve taken unpaid leave from work to allow me to make the most of the summer; work has been incredibly supportive in light of my diagnosis. 37365C77-AA25-4BDC-B860-D545C8721E29 I’m continuing to do early-morning swims with friends at Tooting Lido, one of the country’s largest outdoor swimming pools which happens to be a 15-minute walk from where I live in south-west London (see photo from this morning – the water was cold despite the sun). Also, I’m planning a trip to the US in September to visit two aunts, one of whom is also my godmother.

The highlight, however, has been cycling the Prudential Ride London – Surrey 100-mile bike ride at the beginning of August. Given the circumstances, I couldn’t be happier.

Ride London was meant to be the icing on the cake of a summer of cycling. However, I had to pull out of the two big events I had planned to do in June and July and Ride London turned out to be a big event in itself.

When I got my diagnosis in April, my head was not in a good space. I also had anaemia which meant I very easily got tired. At best, come August, I thought I might be in a position to try the shorter, 46-mile version of the route. In the end, I got my head in gear. In addition, a blood transfusion gave me an energy boost and the confidence to get out and start training again.

I was delighted I was able to do this ride – as you can tell by photo of me at the finish line at Buckingham Palace. It’s on closed roads, some 32,000 cyclists take part and while it’s a bit chaotic, it’s a great event. This is the third consecutive year I’ve done it.

It’s quite hard to get your head round the fact that you can comfortably cycle some 100 miles while having advanced breast cancer. I guess I have to thank modern medicine; a consultant oncologist who clearly thinks that if you think you can do something you should give it a go; incredible support from friends and cycling buddies who took me out on training rides, encouraged me, and had more confidence in me than I had in myself; and, I have to concede, curiousity (can I do this?) and extreme bloody-mindedness (I can do this. I will do this.) on my part.

Sometimes you feel like you’re two different people living two different lives running in parallel. One’s busy training for and doing 100-mile bike rides and the other is undergoing treatment for and living with an ultimately incurable disease. But of course it’s all just you.

There was no guarantee whatsoever I’d be in this position at this stage. It’s early days and, as with anything in life, nothing lasts forever. We just have to embrace the good times while we can.

*I had to self-inject filgrastim on Aug 6th and 20th and I didn’t want to traipse through cauldron-like Europe with injections that needed to be kept refrigerated. So we left the second injection in the fridge at home and went on a ten-day road trip in central and southern Spain from Aug 9th to 20th, during which we spent lots of time with various sets of good friends Andy and I first met when we both lived in Spain in the mid 1980s. We couldn’t have had a nicer time.