Making my peace with Parkrun


I wanted do one final Parkrun after lockdown ended.

In the end I did two and, with a grand total of 103 runs under my belt, I’m now bowing out.

These popular, volunteer-led 5k running events used to take place every Saturday morning in hundreds of parks across the UK. By the time they stopped with the first lockdown, in March 2020, I’d done 101 runs – a considerable achievement, it has to be said, considering I did most of them after I finished treatment for primary breast cancer in February 2016 and a dozen or so after I was diagnosed with secondary, incurable breast cancer in April 2019.

I didn’t run for a good few months after my secondary diagnosis. Indeed at one stage, I genuinely thought my running days were over. Thankfully they weren’t.

The cancer is in my bones and the fact that it has also “infiltrated” my bone marrow means I’ve been anaemic essentially since my secondary diagnosis. The ongoing inability of my bone marrow to make enough haemoglobin to transport sufficient amounts of oxygen around my body is a major challenge.

I’d really just started doing Parkruns regularly again when the pandemic hit. My stamina and strength massively reduced over the 16 months of lockdown. I kept running on and off, despite the anaemia and despite the fact that I had problems with my feet – caused by the medication I was on and made considerably worse by running.

Anyway, Parkrun finally started up in England again a couple of Saturdays ago. By pure chance, one of my brothers and his son were visiting us in London at the time. We all egged each other on – in a nice way – and decided we’d all go for it. This, I said, would be my last. It would be good to have some support.

It was a two-lap course. I started at the very back of the pack, assuming I’d be running very, very slowly compared to many if not all of the other runners. Also, I’d decided that being at the back would be safer from a coronavirus point of view. Given I’m on active treatment for advanced breast cancer and immunocompromised, I’m categorised as clinically extremely vulnerable. Very soon after lockdown began, I decided to stop shielding – ie staying at home and not going out other than when absolutely necessary – in favour of being careful when I was out. No point in being reckless now, I thought. I sought advice from a doctor friend and she agreed the risk was low.

Off we went. I jogged around ten steps then realised I couldn’t jog a step more. My legs felt so heavy. They just wouldn’t move. No matter what my head was telling my body, that clearly was not going to change. It was all a bit strange, as several weeks earlier I’d done a run of the same distance – slowly, but problem free.

I started walking and after a few minutes tried jogging again. No change; a few metres at a time was all I could manage. My head was all over the place. This was my final Parkrun and it was turning out to be a huge disappointment. I genuinely thought of giving up there and then. Then I thought how daft that would be, given that all I’d be doing instead was cheering on my brother and nephew and all the other runners. I then gave some consideration as to what Parkrun’s about – it’s about participation, community, effort and overcoming adversity. Parkrun has changed the lives of thousands of people for the better and taking part has been such a privilege. For many, just walking the course is a huge achievement. Dropping out would be such a negative way to finish my Parkrun “journey”, I thought. I checked with the “tailwalker” – the person who brings up the rear and makes sure no-one comes last – to see if he would be ok with me walking most of the route. He said that was more than ok. It turns out his wife was Scottish and we spent a fair part of the course talking about Parkruns in Scotland.

I duly finished the course. In a pack of more than 450, other than for the tailwalker, I came last. I jogged the final few metres – because how could I not? My husband, brother, nephew and a few enthusiastic Parkrun officials/volunteers cheered me over the finish line. It wasn’t a disappointment at all. In fact, it all felt great.

102 Parkruns and out – or so I thought.

Then something happened a few days later that made me want to try again. I had blood tests done, and it turns out my haemoglobin level was almost as low as it had ever been since I was diagnosed in Spring 2019. It was pretty darn low. That went a long way towards explaining why I could hardly put one foot in front of the other the previous Saturday. The day after I got the test results, I had yet another red blood cell transfusion – my third since late June. Two days later I ran what I’m pretty sure will be my final Parkrun as a participant. I’m ok with that; I now feel I’ve made my peace with this wonderful initiative.

A blood transfusion doesn’t fix everything. It gives you a very welcome temporary energy boost but it does not make you superwoman, or indeed get you remotely close to the level you were at before your diagnosis. Even after this latest transfusion, my haemoglobin level is still only at two thirds of what it was pre-diagnosis. I was wiped out after the run, my hips and my knees hurt and I basically spent the best part of the rest of the weekend on the sofa. I even went for a nap on Saturday afternoon. To be honest, I would probably have stayed in bed had I not been going to see Chrissie Hynde – yes, that Chrissie Hynde! – in concert that night at the Royal Opera House in central London. The following day I still felt shattered and I cancelled a lunch date in town, which is most unlike me.

However slowly I ran, it was worth doing this final run for reasons of personal satisfaction. It was also fitting that it was at my home course of Tooting Common, where I’ve done the vast majority of my runs (the previous week’s run was at a nearby Clapham Common). I’m not sure I want to spend whole weekends in recovery mode, though, so it’s 103 and out. In future I’ll be helping out as a volunteer, which I’ll be more than happy to do.

I have my next set of blood tests next week. We’ll find out how my haemoglobin is bearing up two weeks post-transfusion and we’ll be looking closely to see what action there has been on the tumour marker front. At the end of my third monthly treatment cycle almost a month ago now, the marker had, to our pleasant surprise, unexpectedly fallen slightly when the trend over the first two months of treatment had been upwards.

The other procedure I’m having that could help on the haemoglobin front hasn’t yet had an impact. It can take a while to work, so we still have a few weeks to go with that.

The seemingly never-healing cold sore wound on my lip has almost gone. Hurrah! I have had this wound on my lip for two whole months now. Two whole months. Also on the positive side, the medication-induced ulcer that started developing on my tongue a week or so ago went away as quickly as it came. I nearly cried when I first felt it. Just as I get rid of the cold sore wound, I thought despairingly, a tongue ulcer comes to replace it. If you’ve never had one of these, count yourself very, very lucky.

Here’s nice story to finish. I told our sons a while back that I’ll lose my hair as and when I move on to my next treatment – intravenous chemo. I didn’t want it to come as a surprise to them when it happened. My hair at that point was the longest it had been in years. I mentioned to the younger son a week or so ago that I was thinking of getting it cut. He himself is a redhead and has a beautiful thick mane that reaches half way down his back. Without hesitation, he says, “Nah, mum, use it ‘til you lose it”. I compromised with a trim! 

When a 5k run means so much more than a 5k run

The very slow 5k run I did this morning ranks among the sporting endeavours of which I am most proud. It is also almost certainly the slowest 5k I have ever run.

The idea that I might get out there and try running five kilometres began forming a week or so ago. I hadn’t done any running at all in more than two months. As a result of that and various other factors, I’d really lost my confidence. But the omens were good. 

The main thing was that the wounds I’d had on my right calf and right sole were finally healing. I had two pigmented and irregularly shaped lesions removed towards the end of April and the resulting wounds were taking longer to heal than I’d anticipated. Apart from the odd bike ride a month ago to see how the wounds would bear up – they didn’t – the only exercise I’d done since having the procedure done was walking.

Secondly, my feet were feeling better than they’d felt in many months. The side effects of capecitabine, the previous medication I was on, had worn off. The specific side effect from which I suffered is called palmar-plantar or hand-foot syndrome, where you develop sore and red palms of hands and soles of feet. The skin may also begin to peel. With me, only my feet were affected. They would hurt even when I was walking and the pain would keep me awake at night. With running, I’d get huge blood blisters even in the most comfortable and supportive running shoes.

So as I say, the omens were good.

Then, to top it all, just three days ago on Friday last week, I had a blood transfusion. The reasons for needing a transfusion are never good but I know from experience that they give you an energy boost. In my case, the metastatic breast cancer that has spread to my bones and bone marrow is preventing my body from making healthy red blood cells. My haemoglobin keeps falling, making me anaemic. This was my fourth transfusion since being diagnosed with advanced breast cancer over two years ago. The third one was only a few weeks ago. The effects of a transfusion can last for up to two weeks.

So those were the reasons making me think I should do a run. On the flip side, it’s been a really difficult few weeks on the cancer front (more on that in another post) and I’ve been struggling to deal with it all. Also, I have a cold sore that’s taking forever to heal and that is making me feel really self-conscious, not to mention lethargic and down. 

One part of me was thinking “go for it”. Another part was saying it would be no big deal if I never ran again. 

Anyway, I can’t tell you how many pep talks I had with myself before I finally put on my running shoes, left the house, and walked to where I wanted to start the run. 

I reminded myself that I will probably have to change treatment again soon. It’s a dead cert that my ability to exercise will be curtailed further once that happens.

Also, hand-foot syndrome is a potential side effect of the treatment I’m currently on and have been on for just over two months. While my feet have indeed been fine for a while, very recently the tingling and throbbing has come back at night and my sleep has been badly disturbed a few times in just this past week.

If I didn’t attempt a 5k now, when would I? The answer to that was possibly never. 

I also tried to think of what the various cycling coaches I know would say to motivate me.

I’m pretty certain that when I was in my 20s, I ran a 10k in almost the time it took me this morning to do 5k. But it really doesn’t matter. It really doesn’t. What matters is that I ran at all today.

What makes it even better is that I did the local Parkrun route. Parkrun is a free, timed, mass-participation, volunteer-led 5k run that pre-pandemic took place on Saturday mornings in parks around the UK and indeed in many countries. I was a huge fan and ran my 100th Parkrun in January 2020. I managed one more before the very first lockdown began two months later. 

The route comprises three laps of Tooting Common, the green open space that starts at the bottom of our street in south west London.

I did stop once, to take a photo of a cluster of mushrooms (see above).

That probably added at least 20 seconds to my time. Anyone who’s pushing or over 58 will know how much effort and time it takes to get down into and back up from a squat!

It was hoped that Parkrun might start up again in England some time this month but it’s been postponed to the end of July. Initially I was really excited at the thought of it starting up again but now I’m not sure about running among large crowds. I wrote recently that I’d like to do at least one more Parkrun. After this morning, morally, I feel I’ve done it.

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. While the rise is within acceptable limits, if it contines to rise – and depending on scan results – 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.