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 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.

A stark reminder that you can never relax

The results from the PET-CT scan I had at the beginning of this month could have been a lot worse but they did not bring the across-the-board good news we were hoping for.

Everything had been pointing to a positive overall response to the treatment I started in May for secondary breast cancer. However, the scan results showed that there has been some growth in the cancer that’s in my spine.

The level of growth is not enough to necessitate an immediate change in core treatment but I’m aware this could now happen sooner rather than later.

The results from the MRI scan I had yesterday will provide additional information that will help inform near-future treatment decisions. We’ll also be looking very closely at next month’s blood test results and I’m to have a repeat PET-CT scan in two months’ time.

I wasn’t surprised by the results; nothing surprises me with this, good or bad. I’m not freaking out but I am hugely disappointed.

We had hoped that the drugs were keeping everything under control. Rather, it turns out I’m having a varied response to treatment. Some aspects of the cancer are responding differently from others. While this is not usual, it’s also not hugely unusual.

I’d been having blood tests every month since starting treatment for the breast cancer that had spread or metastasised to my bones (the main focus is certain vertebrae in my spine) and bone marrow. We knew from the results that the drugs were working really well on the bone marrow front. We’d even postponed the PET-CT scan – my first since I was diagnosed – by a couple of months because things were looking so good. There had been some twitches here and there in my back in recent weeks but nothing approaching what I’d describe as pain.

The good news is that there’s no sign the cancer has spread anywhere else and my bone marrow function continues to improve. And so I continue on my current treatment.

Of potential significance is the fact that the latest blood test results showed that a tumour marker specific to secondary breast cancer is very slightly up. It’s fallen every month since I started treatment and while the rise is within acceptable limits, if it contines to rise we’ll potentially be looking at calling it a day on the drugs I’m on and moving to the next line of treatment.

More positively, other tumour markers are continuing to fall.

There has been one change to treatment. “Bone mets” weakens your bones and puts you at risk of “skeletal related events” such as fracture, radiotherapy or surgery, or spinal cord compression. 

I was on a bone strengthening drug called zoledronic acid or Zometa that was aimed at preventing these SREs.  I’ve come off Zometa and have moved to a different drug – denosumab (Xgeva) – that is designed to do the same thing but in a different way. The two core drugs – fulvestrant (Faslodex) and abemaciclib (Verzenios) – haven’t changed. Treatment is on a monthly cycle; I went ahead with round #7 last week.

In other news, I’m still running, edging closer by the week to my 100th Parkrun, the free, volunteer-led 5k running event that takes place in parks up and down the country every Saturday morning. Just last weekend, visiting my family in Glasgow, I ticked off number 94. I ran with two of my brothers and a niece and nephew.

It’s taking some time to get my head round this latest development. Things had been going so well that I’d allowed myself to start looking further ahead than just one or two months. After this turn of events, it’s very much back to one month at a time.

So, a stark reminder that no matter how well you think things are going, with this disease you cannot take anything for granted. As I’ve said before, we can but take things as they come.

In the meantime, on we go. For now,  that involves a ten-day holiday in Israel and Jordan for my other half and me. It was have to been 14 days but we changed our outward flight to accommodate the MRI appointment and are leaving a few days later than planned. We fly out later today. An adventure awaits.

Lucky or unlucky? It depends how you look at it

Understandably, a lot of people get upset when you tell them you’ve been diagnosed with secondary breast cancer. My boss was one of the first people I told, back in April or May. We chatted and she said, sympathetically, that I’d been so unlucky.

She and I both know how serious any type of secondary cancer is. If you’ve been diagnosed early enough, it will be treatable and can be controlled – in some cases for many years – but ultimately it’s incurable. What treatment does is buy you time. 

Instinctively I agreed with my boss. To find out at the age of 55 that your likely prognosis is in years not decades felt pretty unlucky to me.

Almost immediately, though, it occurred to me that that wasn’t actually the case. In fact, I said to her while trying to hold back tears, I’ve been incredibly lucky.

What do I mean by that?

Well, there have been some very sad and difficult times but, broadly speaking, I have not had a hard life.

I have an amazing partner I’ve essentially been with since I was 21. We’ve had and are continuing to have lots of good times together.

I have two lovely, healthy and seemingly happy young-adult children. 

Mum, my brothers and me

I had a happy childhood with loving parents and five great brothers. My dad died just a few years ago but my mum is alive and kicking and clearly loves me to bits. My brothers and I are all still very close. The photo here is from when I was up in Glasgow this summer.

I have two aunts – my dad’s two sisters – out in the US, one of whom is also my godmother. I’m very close to both despite the distance between us. I went out to visit them this past summer, thus the photo below. One of my brothers was there too, from Scotland, and while I know the term “joy-filled” sounds schmaltzy and cliched, I can’t think of a better way to describe the few days we were all together.

My husband’s parents, my in-laws, thought the world of me. We were lucky to have them in our lives for as long as we did.

Outside of the family, I have a godson and goddaughter I’m incredibly fond of. I got to see both of them this summer.

My lovely aunts and me

I have numerous wonderful friends and lots of different friendship and acquaintanceship groups.

We’re financially secure and I have great colleagues and a job I love.

I’ve been able to travel extensively, both on a personal and professional level.

I’ve been responding well to treatment; there was no guarantee I would. 

Physically, most of the time, I really don’t feel like there’s anything wrong with me over and above the standard things any 56-year-old female might expect to have. I’m cycling, running and playing tennis.

Other treatment options will be available once the specific treatment that I’m on stops working. I hope it’ll be a long time before that happens but I’m aware it could happen sooner rather than later.

So have I been lucky or unlucky? Maybe it’s not a question of one or the other. We’ve had our share of troubles and no-one would ever choose to have what I have. Regardless of how well I feel physically at the moment, living with an incurable disease is really tough emotionally. Among other things it’s hard not to feel guilty for bringing this upset into everyone’s lives. 

Healthwise, I can but hope for the best and take the coming months and hopefully years as they come. In the meantime, I’ll try to stay calm and be easy on myself, and keep appreciating and making the most of this life – lucky or unlucky – that I have.

A birthday, a bike ride and a breast cancer reality check

That was a fabulous weekend – despite there being a stonking big breast cancer reality check at the end of it.

On Friday I went ahead and started my sixth monthly treatment cycle for the secondary breast cancer with which I was diagnosed in April. A mix-up with bloods meant it didn’t happen the previous day as planned. According to the blood test results, things are still looking good. For that, I am incredibly thankful.

The following day was our older son Jamie’s 21st birthday. It was the loveliest of occasions.

My mum bowling!

The two boys came back from uni and my brother Peter, who is also Jamie’s godfather, came down from Glasgow. He brought my mum with him. Finally, my two adult nieces – the boys’ cousins – who live in London (and who very sweetly call me their London mum) were also there, with the boyfriend of one of them. We went bowling!

The cake

Since I was diagnosed with this treatable but ultimately incurable illness in April this year, milestones have even more special significance than they ordinarily would have.

At this one, there was a sense of calm and wellbeing with lots of joy, affection, love and laughs… and, of course, cake. 

Then on Sunday, the next day, the two cycling clubs I ride with – BellaVelo CC and Balham CC – joined together for a 100 kilometre bike ride in my honour and to raise funds for research into secondary breast cancer.

Up to 90 of us, including my brother Peter, rode out through Surrey in different pace groups and then all met up in a coffee shop back in London at the end.

After the ride

The Balham club has a nice write-up and more photos of it here. The charity we raised funds for is called One More City.

It wasn’t until I saw the photos that I realised quite how many colours I was combining on the ride. I decided it would be fun – and appropriate – to wear both clubs’ kit and then, with the gloves, I added a touch of “breast cancer pink” to mark the fact that we were doing this in October, breast cancer awareness month.

The debate over the whole pink thing is quite polarised. In my case, I don’t mind the use of the colour but I do object to the use of “fun” props such as inflatable boobs and pink wigs, pink boas, pink tutus and the like. I get the fact that people want to make public displays of support and/or need an outlet for their own fears or other feelings but I find a lot of it quite tasteless. I think it trivialises, infantilises and sexualises this killer disease.

Colour clash!

Now we’ve got the feminist speech out of the way, let’s get back to Sunday’s ride. The two-club kit combo was bright enough but I hadn’t taken into account the bike and water bottle. That took the whole colour thing to another level!

The bright colours were appropriate, though, as they kind of reflected my mood. I was quite overwhelmed that some 90 people had signed up to do this event. I was definitely feeling the love. The support and sentiment that led to this ride taking place meant a great deal to me on a personal level and on top of that it was great to get these two lovely clubs together. I’m extremely grateful to everyone who helped organise and took part in the ride and/or have supported the One More City charity.

Relaxing on the sofa on Sunday evening with a glass of white wine, I reflected on what a lovely few days it had been. Treatment had gone ahead and both the birthday celebrations and the bike ride had gone really well. It had all been very special.

Then I read on Twitter of the death from secondary breast cancer of Deborah Orr, a huge character and well-known personality from the world of journalism. At 57, Deborah was just slightly older than me; she was also a Glaswegian. Chillingly, she died just months after receiving her secondary diagnosis. She was clearly very ill, but her death came as a shock, at least to me. I suddenly felt terribly sad.

Right there on the sofa, I raised a glass to Deborah and felt even more grateful for the weekend I’d just had.