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! 

A welcome surprise and another lesson in unpredictability

Well, well, well. Not only did the PET CT scan I had a couple of weeks ago show no disease progression, my tumour marker level has fallen twice in a row over the past several weeks. The ongoing inability of my bone marrow to make enough haemoglobin to transport sufficient amounts of oxygen around my body continues to be a major challenge but there’s no doubting this is welcome news.

It was not expected. For me, it’s yet another lesson in how unpredictable this whole thing is.

I was more or less resigned to the breast cancer that has spread to my bones and “infiltrated” my bone marrow having spread further. This would have meant my moving on to intravenous chemotherapy. Instead, I am staying on my current medication – a combination of two (non-chemo) drugs, everolimus (Afinitor) and exemestane (Aromasin). This will be my fourth monthly cycle on these two drugs, which are taken in tablet form, once daily.

I know that iv chemo is an inevitability and I have to accept that. However, I’d be lying if I said the thought of it doesn’t scare me, with all of the associated additional and potentially lengthy treatment sessions and toxic side effects, including hair loss. Thus my relief at having dodged this particular bullet – for however long it may be.

Let’s stay with the good news. Not only was there no progression, there was, in the words of my consultant oncologist, “a hint towards better” in that the disease in my spine and pelvis showed up as less bright on the PET scan than it has done on previous occasions. The brighter an area is on a PET scan, the more active the cancer is in that area.

As for the tumour marker, this had shot up considerably towards the end of the second treatment cycle, suggesting there had been an increase in cancer activity. Now, going by the latest test results, it is back at almost exactly the level it was at when I started this current treatment three months ago.

On now to the issue of my bone marrow and the fact that the cancer is impairing its ability to make healthy blood – most critically at this stage healthy red blood cells, which contain the haemoglobin that transports oxygen around the body.

On the haemoglobin front, I’ve essentially been anaemic to one degree or another since my diagnosis in the spring of 2019, well over two years ago now. Up until now we’ve intervened with transfusions of red blood cells when it has fallen to a level that’s considered too low. I now generally know myself when it’s falling as I get breathless doing the simplest of things such as climbing stairs. That’s pretty much the current state of affairs.

Yesterday, for example, I went to Tooting Bec lido* for the first time since last summer. It’s baking hot in London at the moment so this is a great place to be. I swam four widths (the pool is 33 yards wide), breast stroke, after which I thought my heart was going to burst out of my chest it was beating so hard! That said, it was fabulous to be there and I was fine after a rest.

The problem with blood transfusions is that you can only have so many before you get iron overload, a serious condition that can damage major organs such as the heart, liver and pancreas. We’re not close to that stage yet but it wouldn’t take long to get there if I were to continue to have transfusions as regularly as I’ve had them recently. Earlier this summer, I had two within less than six weeks of each other. We’re now therefore looking at ways of tackling the problem that don’t involve transfusions. I hope they work.

My tumour marker and haemoglobin levels will be monitored even more closely than usual over these coming weeks. The results of the other scan I had – an MRI of my spine – have still to come through. I should get those next week. 

I can also report that a good few of the drug side effects and/or other physical ailments that were making me so miserable on a physical – and emotional – level have subsided.

I’ve continued to stay to clear of the painful and spirit-sapping mouth and tongue sores that I had on and off during the first and second cycles. That sentence really does not do justice to how awful these sores are. 

The massive cold sore wound on my bottom lip that wasn’t healing and that’s been plaguing me for around six weeks seems to have a mind of its own. One day it seems almost to have gone but then it’s a bloody mess again the next. I’m not swearing here, it really is sometimes a bloody mess. However, it does seems to be going in the right direction, albeit very, very slowly. Also, the wounds from the two pigmented skin lesions that I had removed from the sole of my right foot and my right calf nearly three months ago have now completely healed. These two things combined allowed me to go to the lido yesterday, although I did keep my face out of the water to be on the safe side.

The night sweats have been much less frequent but are still pretty nasty when they do happen. 

The discomfort that I’d been feeling in some teeth has gone – at least for the moment. I have a session with the dental hygienist at the hospital next week, by which time I really hope the cold sore wound has fully cleared up.

The sore feet at night can be a bit of a nightmare, especially if I’ve been out on a long walk during the day. My plan to take sleeping tablets more regularly so as to basically knock myself out hasn’t worked as planned. You can’t take alcohol with sleeping tablets and at 7pm when I fancy a cold beer or glass of cold white wine (or both!), bedtime seems a long way off. The alcohol usually wins!

I’ve had some new joint pain, but I can’t tell whether this is cancer- or age-related. The pain either eases on its own or I take painkillers. 

My 58th birthday has come and gone.

There was so much going on and so much uncertainty on various levels in the weeks running up to the day that I had been veering from thinking I wanted to see as many people as possible to feeling that I just wanted to hide under the duvet all day.

In the end, I had a lovely time, with celebrations and events with friends and family spread over the best part of a week, or indeed longer.

On the day itself, we kept things low key, with a little but perfectly formed extended family group. The rain stayed off and the cake tasted as delicious as it looks in the photo.

Over the course of a few days, there were multiple deliveries of, among other things, cakes, pastries, chocolates and flowers – lots of flowers!

There was a trip to the Wimbledon tennis championships, with Dave, my friend and partner in seizing the day. I have incurable breast cancer; Dave is five years younger than me and has Parkinson’s disease.

My husband and I went to the Hampton Court Palace Garden Festival one evening. Friends treated us to supper at the smartest restaurant in our local area. Some very good friends visited and stayed over one evening. We had a very relaxing night away with our 22- and 20-year-old sons.

I also went to a gig at London’s Jazz Cafe on July 11th, the day after my birthday. This was the night of the European football championships final in which England – the “auld enemy” of my country of birth – were playing. I’d booked this evening out a while ago as a birthday treat for my husband, our sons and me. However, when it became clear that England was going to be in the finals, I started looking round for replacement company – friends who, like me, didn’t mind whether they watched the match or not. An Australian friend and a Dutch friend answered the call and we had a lovely evening – unlike the people watching the match, given the sad ending for England! I’m only sorry that one of the two friends had to self-isolating afterwards as she was “pinged” to say she’d been in close contact that evening with someone who later tested positive for COVID-19.

Suffice to say I have felt very loved over these past couple of weeks. The cutest and perhaps best birthday present of all was a promise (see photo) from our sons to become blood donors. I understand they were all set to donate before my birthday but they both contracted Covid and had to postpone it. I’m quite hardline on this in that I see giving blood as one’s civic duty but I have to concede there was a certain amount of persuasion and emotional blackmail involved here!

Back to my medical situation.

The bone marrow impairment is of course a big concern but one has to be grateful for the other, more positive news. I am delighted to have received this unexpected surprise. Nonetheless, it seems appropriate to end this post with a phrase that I’ve used many times before: let’s just see how things go.  

*At 100 yards long and 33 yards wide, Tooting Bec Lido in southwest London is the largest freshwater swimming pool by surface area in the United Kingdom. It holds a million gallons of water and is just a 15-minute walk from where we live.

Saying it like it is

From a living your life point of view, the past six weeks have been fabulous. On the cancer and related general health front, they’ve been much less so. It’s getting increasingly difficult to separate one from the other.

We went on no fewer than three trips, one by train and two by car.

We visited some beautiful parts of England. We did lots of sightseeing. With friends or on our own, we went to museums, art galleries and exhibitions. We visited various sets of friends and relatives, some of whom we hadn’t seen since just before the start of the coronavirus pandemic in March 2019 and some of whom we hadn’t seen for many years. We helped our younger son move into his third year accommodation at university in the city of Leeds in the north east of England. 

Back in London, I continued to meet up with people – current and former work colleagues, my brother and nephew who were down visiting from Scotland, and a group of women from BellaVelo, one of the two cycling clubs of which I’m still a member, despite not having cycled with either of them for a very, very long time.

As you may be able to tell, I did not do much work in June.

That’s a synopsis of what’s been happening over the past month-and-a-half in that part of my life over which I have control. Now here’s what been happening in the part over which I have little control*.

I had two blood transfusions in the space of just over five weeks, each prompted by falling haemoglobin levels.

My most recent blood tests showed a substantial rise in my tumour marker level, meaning there’s been an increase in cancer activity.

The implication of the above is that the metastatic breast cancer that’s in my bones and has infiltrated my bone marrow has not responded to the treatment I started just over two months ago. My next set of scans – a half-body combined PET CT scan and an MRI of my spine – is therefore being brought forward as we want to try to determine whether the cancer has spread.

If the scans show signs of progression – or even perhaps if they don’t but the tumour marker level is still markedly rising and my bone marrow is still struggling to produce healthy blood – I will move on to the next line of treatment. This would be my fourth treatment since I was diagnosed with advanced breast cancer just over two years ago. It would be iv chemo, with all of the associated additional and potentially lengthy treatment sessions and toxic side effects, including hair loss. I am really, really, really not ready for any of that. Also, with each new treatment you start, you can’t help but be aware that you’re one step closer to running out of options.

But let’s not pre-empt things. Who knows what the scans will show?

Back to the tribulations of the past six weeks.

I had another round of treatment-induced mouth sores. However, I’ve been totally clear of these for the past few weeks, which is a huge relief. You can read in previous posts how painful these were.

Another side effect of one of the drugs I’m on is night sweats. I’ve been having these on a regular basis, although not so much in the past week or so. When they happen, it means: 1) having to change your nightwear in the middle of the night; 2) changing the bed sheets the following morning; and 3) depending on how wet the sheets are and what time of the night it is, moving to the bed of the son who at the time was still away at uni and trying to get back to sleep. My oncologist and I agreed that for someone such as me who pretty much sailed through the menopause, this is a particular affront. I’ve had more night sweats in the past two months than I had during the whole of my menopause.

I had a slight temperature over the course of a couple of days and at one stage I feared it might jeopardise a much anticipated trip to Wales and Manchester. It was fine in the end but there was a fair amount of anxiety involved.

There’s more.

I wouldn’t go so far as to call it a nose bleed, but one morning there was blood rather than mucous on the tissue when I blew my nose.

That kind of freaked me out as you’re advised to “seek medical advice urgently” if you develop “gum/nose bleeds or unusual bruising” (see photo). I duly called the emergency number I’d been given and spoke to one of the oncology nurses.

The nurse asked me lots of questions, after which her reassuring advice was: “Monitor it and call us again if it gets worse.” Thankfully it didn’t and all was ok. So off I went to an arranged lunch date with two friends – women I’d met at antenatal classes 23 years ago but hadn’t seen for several years.

I’ve also been having dental problems – not quite pain but certainly discomfort in a couple of teeth. Tooth or gum problems ring pretty loud alarm bells in people such as me so I reported the discomfort to the cancer nurse specialists who work alongside my oncologist. An appointment was immediately made for me at the specialist dentistry department at the hospital where I’m having my cancer treatment.

I was given an extremely thorough dental examination that involved among other things tooth sensitivity testing and x-rays. Nothing of concern was found. The discomfort remains. I’m to be seen again in three months’ time, or sooner if it gets worse. In the meantime, I’ve been referred to the hygienist for a deep clean (my own words there).

Zometa (zoledronic acid), the bone strengthening drug I currently have via infusion over 15 minutes every four weeks, helps prevent skeletal related effects of the cancer such as bone fracture, pain and subsequent radiotherapy, and spinal cord compression. It’s one of a group of drugs called bisphosphonates that, unfortunately, come with a small risk of a nasty condition called osteonecrosis of the jaw, or ONJ – a rare but potentially debilitating condition in which bone tissue in the jaw is no longer covered by the gums and starts to die.

ONJ symptoms can range from very mild to severe. It can cause tooth or jaw pain and swelling in your jaw. Severe symptoms include infection in your jaw bone. You can get ONJ after dental procedures, such as extractions. The healing process after such procedures may take a long time or may not happen at all. That’s why everything possible is done to avoid the need for tooth removal in patients taking Zometa or denosumab (Xgeva), another drug used in this setting. That’s why my report of dental problems was taken so seriously.

Your risk of ONJ increases the longer you’re treated with bisphosphonates or denosumab. I’ve been on either Zometa or denosumab since my secondary diagnosis. In addition, I was on Zometa periodically for some time after my primary diagnosis as there’s some evidence that, in post-menopausal women, it can reduce the risk of breast cancer coming back.

Given all of the above, I’m taking a break from Zometa this month to see whether it makes any difference with regard to the discomfort. And I guess, in case any dental treatment were needed.

I was impressed that an appointment was found for me so quickly. However, it was on the morning of the day we were setting out on our Wales/Manchester adventure and I spent a fair amount of time worrying about whether we’d make the train. We did make it, and it was the loveliest of trips, despite my teenage goddaughter in Wales beating me at chess in an agonisingly slow game that lasted the best part of two hours. We’re evens now, but I will endeavour to rise again!

I mentioned in my last post that I had started once again to have sore feet at night, yet another side effect of one of the drugs I’m on. I suffered badly from this under my previous drug regime and while it’s not as bad as it was then, it’s no fun. Now as then, it’s exacerbated by exercise that puts pressure on the feet, such as running or long walks. Cold, wet towels to wrap round my feet in the middle of the night when the discomfort is stopping me from sleeping are once again a feature.

I’m not so bothered about running, having proved a point by completing a 5k just recently. Stopping walking or only walking for short distances, however, is not an option.

Had I not been prepared to walk on the various trips we’ve just been on, it would have meant not traipsing round and enjoying the northwestern city of Manchester for hours and hours and hours over the course of a couple of days with friends from London.

It would have meant missing out on wandering round the Yorkshire Sculpture Park, south of Leeds. This has been on my to-do list for ages and it didn’t disappoint (couple of photos here as evidence).

It would have meant not exploring the pretty village of Hathersage in the Peak District.

And it would have meant not walking round Sherwood Forest near Nottingham or visiting the small but super interesting Civil Wars Museum in Newark.

For the moment, I’ll take the sore feet. It’s a price worth paying. They’re not likely to get any better under the next treatment. Hopefully by adding painkillers and/or sleeping tablets to my arsenal, I’ll get by.

On top of all that, the wound on my lip from the horribly painful and ugly cold sores that I had earlier this month is taking forever to heal.

The cold sores appeared over a month ago, triggered by a bike ride in the sun (see photo) on the first of the three trips.

One day recently, my lip looked so awful that I almost called off a brunch date with a very, very good friend and her husband. I’m so glad we went in the end. On another occasion, the wound started bleeding when we were minutes away from the house of some old friends we were going to visit. I burst into tears from sheer frustration. We stopped the car and waited til the bleeding had stopped and I’d stopped crying before continuing.

While we’re on the subject of wounds, the one on my right calf that was healing so well opened up again, stopping me from exercising at a time when my feet were still fine. Is that ironic or just Sod’s law? The wound has almost cleared now.

Finally, my finger nails are getting ever softer and weaker and in some cases are lifting off the nail bed. As for my hair, when I find a knot and try to tease it out, sometimes a whole clump of hair comes out.

I started this latest treatment – a combination of two (non-chemo) drugs, everolimus (Afinitor) and exemestane (Aromasin), taken in tablet form, once daily – a little over two months ago. At my latest appointment with the oncologist, we agreed that I’d stay with it for a third, 30-day cycle to give it a proper chance to work. I agreed to stay on the highest dose of everolimus, despite the problems I’ve been having with mouth sores. The rationale is that we need to give the drugs the best chance of generating a response. I find it rather ironic that I’ve not had any mouth sores during this third and possibly final cycle.

So there we are, just saying it like it is.

I initially thought of having a photo of me having a blood transfusion at the hospital as the final image in this post. How much nicer, though, to use a photo of some of the beautiful roses that we are so lucky to have in our garden. Or rather had in our garden until the rain of the past few weeks came and ruined them!

Let’s see what the next few weeks bring on the health front.

What is certain is that there will be multiple trips to the hospital. Thank goodness I only live a couple of miles away. As it stands, I have six appointments for one thing or another over the next two weeks alone. The first of these was this morning, for blood tests to see how things were looking after the transfusion I had ten days ago. I had blood taken then waited for the results with the cannula in “just in case” I needed another transfusion. I didn’t.

Another certainty is my birthday, next weekend. I’ll be 58. I’m still standing.

*I also have increasingly little control over the lives of our 20 and 22 year old sons, both of whom in the past four or five weeks have had and, thankfully, have also recovered from Covid.

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.

Well that didn’t last long

After four or five glorious days of respite during which once again I could eat whatever the heck I wanted, another blasted mouth sore developed. It was mild to start with but for the past few days it’s been as vicious, if not even more so, than the two I’d just got rid of

Managing these painful, spirit-sapping sores takes effort. For a start, when do you eat when frankly it’s the last thing you feel like doing? Also, what do you eat? 

Because of where this latest sore is, I can only open my mouth so far before it starts hurting. It also hurts to fully close my mouth. The other day in a cafe with friends, I had to cut the crusts off a toasted sandwich and cut the rest of the sandwich into tiny pieces before I was able to eat it. And rather than have a hot coffee, I had a healthy beetroot and carrot juice concoction that I drank through a paper straw. It was rather nice, if also rather expensive. 

And how do you brush your teeth without touching the sore and nearly fainting from the pain? I was always a hard-bristle kind of gal, but I have just bought some soft-bristle brushes.

And how often do you rinse with the various mouthwashes you have? They all sting.

When I had my appointment with the consultant oncologist who’s treating my secondary breast cancer and me on Thursday this past week, this new sore wasn’t causing too much trouble. I had thought that was as bad as it was going to get. I therefore bravely and, with hindsight, in far too cavalier a manner, told the consultant I’d stay on the highest dose of the tablet that’s the cause of the problem for another month. 

However, rather than improve, things got worse. I’m now seriously thinking that I will indeed have to reduce the dose. I’d really rather not do that but I may well have to as this really is no fun. If another sore appears after this one, my mind will be made up. I think. It’s a bit like a “good” childbirth. Once it’s over, you forget how painful it was. Until the next time.

That’s the bad news from this week. It’s been a busy one on the health front, with plenty of decent or even good news. I need to focus on that, really.

The chest x-ray I had on Wednesday was clear. That means that the new treatment regime of two drugs – mouth-sore inducing everolimus and exemestane, both taken as tablets, daily – hasn’t done any damage on that front. 

Also, the results of the biopsies on the pigmented lesions that I had excised on my right leg and foot, also four weeks ago, came back clear. We had suspected they would, but it’s good to have that confirmed. The wound on the sole of my foot that wasn’t healing well is looking much better. 

There’s more. The blood tests I had on Wednesday – immediately before I had the chest x-ray – showed that the all-important tumour marker is stable compared with two weeks ago. That’s the first time it hasn’t risen in many, many months. It’s early days but it shows that perhaps the new treatment will have a dampening effect on the tumour activity. That makes the mouth sore issue even more frustrating.

My kidney and liver are functioning ok too. However, my bone marrow is still struggling (the secondary breast cancer that I have is in my bones and bone marrow). 

I can walk for miles on the flat without any trouble but increasingly just walking up stairs had been making me breathless. The first thing I said to the oncologist when she asked how I’d been was that I reckoned my haemoglobin level had taken a bit of a dive. That was indeed the case.

The bottom line is that after seeing the consultant on Thursday morning, I spent four and a half hours in the Ambulatory Oncology Care Unit at the hospital having a blood transfusion. It takes around two hours to transfuse a single unit of blood and I had two, the same as on the two previous occasions where I’ve needed help on the red blood cell front.

I do feel much better now, energy wise. Never one to waste a good blood transfusion, I have planned two bike rides for this week, one short and one a bit longer. This will be the first exercise I’ll have done other than walking for over a month, specifically since I had the procedure done on my foot. Fingers crossed my foot wound and energy levels behave and that I manage if not both, then at least one.

Distractions are good. They take my mind off what’s going on in my mouth. There have been a few this week. 

Work continues, for example.*

Monday saw us have a meal out – inside at a pub restaurant – for the first time in many, many months. Gathering at the bar is not yet allowed so it’s all table service but it pretty much felt like nothing much had changed.

We went to the pub again (a different one) on Thursday evening to celebrate a friend’s 50th birthday. This time we were outside, as more people are allowed to gather together outside than in.

The wind did its best to blow us away; it did in fact blow a glass of wine into my lap! However, we held firm and had a lovely evening. I’d only been planning to stay for an hour as I’d been feeling miserable earlier that evening. However, such was the power of the blood transfusion I’d had that afternoon that I not only went out but stayed as long as everyone else, ie until closing time. I also remembered that white wine stings less than beer on the mouth sore front so, after one beer, white wine was my tipple of the evening.

Both those nights out were organised well in advance. On Saturday, though, we did something on impulse. Yes, read it again, on impulse! We went to the cinema and, as if that weren’t enough, we went for a meal afterwards – without booking!!!! There was social distancing in the cinema itself but it’s been a long 14 or 15 months since we’ve done anything that remotely “normal”. 

The restaurant was Turkish, where we knew we’d be able to order lots of mouth-sore friendly dishes such as all sorts of tasty but not spicy dips with lovely warm, soft bread.

The film we saw was Nomadland, which was great to see on the big screen with all those amazing American landscapes.

I watched a lot of the film through tears. If you’ve seen it and you’re aware of my situation, you’ll understand why. This phrase from one of the characters, who has terminal cancer, spoke volumes to me: “I don’t want my sail boat to be in my drive when I die.” 

You can take that literally or figuratively. In my case, much as I’d love to do it, heading off on a yacht is not practical. I hope we can head off on foreign trips soon but, in the meantime, there are plenty of things close to home that bring joy.

I’m feeling quite sentimental so I’m going to mention a few.

There’s new life all around. Our revamped garden is bursting into life and everywhere I go it seems I see baby birds. With the ones in the photo here, at Kew Gardens this week, there was no drama – unlike the previous week at Richmond Park.

A friend giving me as an early birthday present a beautiful throw that she’d crocheted herself.

Another couple of friends handing in a surprise bunch of flowers.

Our sons, who are away at uni, WhatsApping us photos of things they’ve cooked for supper. Or one of them pretending he’d had his nose pierced and using it to encourage me to have mine done; I’ve been saying for ages that I want to do it but I’m too nervous.

One of my brothers who lives in Glasgow going out of his way to take one of my sons out for dinner when he was on a work trip in the north of England, near where his nephew’s at uni.

The many messages I get from friends asking how I am and sympathising with me on my “issues”.

And, most recently, my husband presenting me with a box of Tunnocks tea cakes “because they’re soft and they won’t hurt your mouth”.

Allow me a schmaltzy ending: “Take joy in the small things because one day you’ll realise that they were the big things.”

*My story about working with an advanced cancer diagnosis is featured in a campaign that has been launched by an organisation called Working with Cancer. I’m upfront about my prognosis right at the start so please only read it if you’re prepared for that – https://workingwithcancer.co.uk/2021/05/11/maureen-kenny/.

Restrictions lifting and moving on to the next treatment

Pandemic restrictions are loosening and things are looking up on that front. 

We’ve been limited to meeting up with just one other person outside for exercise since December but now the rule of six – whereby you are allowed to gather outside in groups of up to six, including in your back garden – is back. I’m already taking advantage of it. 

In the fading sunshine one evening last week, my husband and I had beers on Tooting Common at the bottom of our street with some friends who live locally. 

We were all so happy to see each other and to be able to actually sit down and relax and enjoy each other’s company. We’ve been meeting up on Zoom and we’ve had some really fun evenings. However, as everyone knows, it’s really, really, really not the same as meeting up in person. This group largely comprises people who were parents of children who attended the primary school at the time our two sons went there. Before the pandemic, we’d meet up once a month in a local pub. Our boys are now 22 and 20 and it’s been a great way of keeping in touch and maintaining friendships. There are way more than six of us; we did more or less manage to arrange ourselves into groups of six. 

Talking of our sons, one is already back home from uni for the Easter holidays. The other is due back later today or tomorrow. We haven’t seen them in three months. That’s not long compared with a lot of people, I know, but this is longest we haven’t seen each other in person. On Easter Sunday, the four of us will have lunch in our garden with my two London-based nieces. Blankets may be involved, depending on the weather. 

Tomorrow morning I’m meeting up, again on the common, with some other good, local friends, all women this time. We’ll be having coffee and pastries rather than beer! Before the pandemic, we would meet up in each other’s houses once a month to catch up, watch a film and discuss it afterwards. We’ve continued throughout the pandemic, remotely. Someone chooses a film, we have a chat on Zoom then we each watch the film in our own homes and we catch up again afterwards on Zoom to discuss the film. It’s been great. There are five of us in this little group, and I think it’s safe to say we all very much appreciate, and take strength and comfort from, each other. Since last August, the group has experienced three bereavements. My mum died from an infection, one member lost her sister to dementia, and another her husband, tragically to COVID. 

Later on next week, I have a game of tennis planned with my four very special tennis buddies, followed by a birthday lunch for one of them hosted in the back garden of another of them. 

Also in our short-term plans is a drive an hour or so out of London to meet and have a walk with some friends we haven’t seen since last August.

Pubs can serve food outside to groups of up to six as of 12th April. Not only have we managed to make two evening reservations for that and the following week, some friends have invited us to celebrate the 60th birthday of one of them one evening that first week at a pub where they managed to get a reservation. Also, an early supper is in the diary one evening over the next two weeks with the tennis crowd. Finally, the BellaVelo cycling club I’m a member of has booked all the outdoor tables at pub on 21st April and I’m due to attend that too. There can be no mixing between tables but it will still be lovely. 

Finally, we’ve booked to eat out – inside!!! – with four friends on the very first day that’s allowed, 17th May. 

If I sound rather desperate to be out and about again and see people, it’s because I am.

We’re also having a mini revamp done of our garden. That is very exciting, especially as we’ll probably be spending a lot of time there this Spring and Summer.

Staying with the good news, I’m due to have my second dose of the Pfizer/BioNTech COVID-19 vaccine this coming Tuesday. It’s not known how much protection the vaccines provide for immunocompromised individuals such as myself, but it has to be higher than zero, so that’s something. 

On the downside, I didn’t get the best results from my most recent set of scans. 

There are some positives. My secondary breast cancer is still confined to my bones and bone marrow; it hasn’t spread to organs such as my liver or lungs. Also, the cancer that’s in my spine isn’t exerting pressure on my spinal cord. 

The bad news is that the cancer has spread within my bones. It is showing up on scans in places that were clear before. “Disease progression with widespread metastatic disease activity now apparent”, reads the report from the combined PET-CT scan of my body from the top of my spine to my mid thighs. The MRI scan I had of my spine shows “widespread diffuse abnormal marrow signal throughout the spine, in keeping with metastatic infiltration”. That said, “overall appearances [of the spine] are relatively stable” compared to the previous MRI scan I had, almost a year ago.

In addition to there having been progression, the relevant tumour marker level in my blood is continuing to rise and my haemoglobin level has been falling. This means it’s time to come off capecitabine, the oral chemo I’ve been on for the past 10 or 11 months and move on to what will be my third line of treatment since my diagnosis of secondary breast cancer two years ago.

There are a couple or perhaps even several treatment options, each of which comes with its own delightful set of potential side effects. We’re still working out what is best and what is possible. I see the oncologist again this coming week, when we will have some more information to inform what the next steps will be. In the meantime, I’m still on capecitabine.

In light of the scan results, we made a change to the other treatment I’d been on.

With bone mets, the cancer weakens your bones. You’re therefore given one or other of two drugs that are aimed at reducing the risk of what are known as “skeletal-related events”, that is fractures, spinal cord compression, bone pain requiring palliative radiotherapy, and orthopaedic surgery. 

In my case, as well as taking capecitabine tablets morning and evening on a one-week on, one-week off basis, I’d been having monthly injections of denosumab (brand name Xgeva), one of the two above-mentioned bone-strengthening drugs.

On seeing the scan results, my oncologist changed from me from denosumab back to Zometa/zoledronic acid, which has the same aim as denosumab but works in a different way. The idea is that trying something different, even though I’ve been on Zometa before, will have a positive effect. I’m fine with that. My position is that almost anything is worth a go, despite the fact that long-term use of Zometa is associated with a higher risk of dental problems than denosumab, such as sore gums and tooth loosening.

I’d only just got used to giving myself the denosumab injections at home. Now it’s back to the treatment day unit at the hospital every four weeks for an iv infusion of Zometa. The procedure only takes half an hour so I guess I shouldn’t complain too much. However, I hadn’t been hooked up to a drip for more than a year (other than to have a blood transfusion last July) and I have to say it felt weird.

Also, because I don’t do things by half, I’m to have two freckles/moles/lesions/whatever removed and biopsied. The dermatologists who examined me said they don’t think they’re suspicious but they advise removal given my current situation and my history of melanoma. 

One lesion is on the sole of my right foot and the other is on my right calf, near the scar from where I had a microinvasive melanoma removed in 2017. The latter has been there forever; the one on the sole of my foot is new. I contacted my GP, who referred me to the dermatology department at the hospital where I’m having my breast cancer treatment. “I’m here so often I should bring a sleeping bag,” I said to my oncologist when I told her about this latest news. I thought it was funny.

I’m waiting to hear when my appointment to remove the moles will be. 

Since I completed my big athletic achievement in early March, I’ve been taking it easy on the exercise front to give my poor feet a rest after subjecting them to such a pounding in January and February. The throbbing - a side effect of capecitabine combined with pre-existing damage from the chemo I had in 2015 – has definitely subsided but it is so much worse at night than during the day. I could count on one hand the number of proper sleeps I’ve had this month. Getting up in the middle of the night to wrap my feet in a cold, wet towel in an effort to sooth the throbbing is not an uncommon event.

I’ve also been feeling knackered – probably due to a mix of a lack of sleep, the cancer having spread, a low haemoglobin level, general pandemic-related general fed-upness, and – perhaps ironically – not doing much exercise other than walking. Seriously, exercise is known to help reducing cancer-related fatigue. And as we all know, if we can exercise, it does make us feel better.

I’ll give the running a rest for another while, but hopefully I’ll start getting some proper bike rides in soon. As for what playing tennis will do for my feet, I have no idea, but I want to play and so I will. I’m not sure my feet can be much worse than they have already been.

Finishing off, we’ll just have to see how it goes with whatever new treatments I end up on. I was on each of the two previous lines of treatment for almost a year. Let’s see how long I last on this next one. Keep your fingers crossed for me.

Completing a challenge amid joy and sorrow

Last Friday was one of those days where you experience a vast range of intense emotions over a short period of time and for hours afterwards they’re all spinning round your head, vying for attention.

It was the day I finished the challenge a friend had set for herself and me in December last year. We were to run, swim or cycle the 192 miles of the Coast to Coast route from St Bees in the Lake District in the northwest of England to Robin Hood’s Bay in Yorkshire in the east. We would do it more or less together – virtually, of course – and we had three months in which to complete it, starting on January 1st.

I decided I would try to run a third of the route and cycle two thirds. I am so slow at running these days but I reckoned running 64 miles and cycling 128 miles over three months was manageable. My friend was running the whole thing. However, once we started, it soon became clear that she would finish in early March. I knew I’d have to up my game to keep up with her.

I’m not going to lie. The running was hard.

I already had a permanent tingling in the balls of my feet and my toes as a result of the nerves being damaged by the chemo I had in 2015 for primary breast cancer. I’ve said before that it’s annoying rather than painful; I am constantly aware of it but it’s just something I live with.

Making things worse, though, was the fact that I think I have developed over the past few months one of the more common side effects of the oral chemotherapy that I’m on as part of my treatment for secondary breast cancer – palmar-plantar or hand-foot syndrome, whereby the palms of your hands and the soles of your feet can become red and sore and numb and swollen and the skin can become dry and blister and peel. Luckily I only have it in my feet and even then I mainly only experience soreness and numbness. It’s more pronounced than the existing tingling (or chemotherapy-induced peripheral neuropathy to give it its officially name) and I’m in no doubt that running exacerbates it. Long walks do too – the friction from walking can result in large and painful blood blisters as the skin is more sensitive than it would usually be.

On one of the secondary support forums I’m on, we refer to it as “cape feet” – “cape” being shorthand for capecitabine, one of the chemo drugs that can cause this particular side effect.

The bottom line is that my feet hurt when I run and the further I run the more they hurt. I therefore decided that I’d do lots of short runs than than fewer, longer runs. If I was meeting a friend for a walk a mile away, for example, I’d run the mile there. I also ran the couple of miles to or back from the hospital a good few times – once after having had blood taken for my latest round of blood tests and another time after having had an MRI scan of my spine, one of the places the cancer has spread to.

Inspired by Parkrun and an associated initiative known as Cancer 5k Your Way, I saw 5k as a good distance to aim for if I was feeling up to it. Parkruns are free, timed Saturday morning 5k runs organised by local volunteers that take place in parks and open spaces around the country and indeed the world. I was a huge fan before the pandemic-related restrictions put a halt to organised outdoor sporting events and, of course, to so much more.

“Cape feet” undoubtedly affects my quality of life. However, as long as I was still able to run, there was no way I was not going to complete the running part of this challenge. I’ve stopped looking at how long it takes me to do stuff now and I’m just grateful that I’m still able to do them. I’ve embraced the concept of “it ain’t what you do, it’s the way that you do it”. Plus, I’d treated myself to a new pair of running shoes and bluetooth headphones!

To encourage myself to get out there and run, I’d been listening to podcasts. Given the foot issue, I realised something more motivational was needed. So I put together two playlists on Spotify – one is called “Mo Is Dancing” (I’m Mo) and the other is “Women in Country”. I love both and it’s always hard to decide which to listen to.

Talking of motivation, I remember on one occasion standing in my running kit outside the hospital after a scan, my feet already throbbing. I was thinking that I really didn’t feel like running home. Then I thought “what if this were going to be your last run?”. That did it, and I set off. Some people say you should live every day as if it were your last. I’ve always thought that was kind of daft because that would mean every day would be exactly the same – and potentially very boring or very exhausting depending on how you’d chosen to spend it. However, it did come in handy that day at least.

It also helped that another online breast cancer support group I’m a member of was holding a challenge of its own throughout the month of February – for its members collectively to virtually walk round the coast of the UK. In addition, my company was running a February Fitness challenge, with around 250 teams from around the world all competing to clock up the biggest number hours of exercise over the month. All the runs and bike rides I did for the Coast to Coast counted towards those challenges too.

In case you’re wondering, running doesn’t seem to cause long-term damage. You do have to put up with some sleepless nights after you’ve been on a run that’s longer than a couple of miles. The symptoms recede to a large degree after a few days of rest (ie no running or long walks) but I have to be honest, the discomfort even when I haven’t been running does still cause the odd disturbed night.

I kept up with my friend by putting in some miles on my bike (mostly outdoors, but there were also a few indoor sessions) whenever she got too far ahead. We decided to run the last few miles at the same time so we’d finish more or less together. We video-called each other a few minutes before our agreed start time and then set off, me in south London on my own and my friend in south Wales with two of her lovely three daughters. We video-called again once we’d finished. It was all quite exciting! And the medal you get for finishing is rather smart.

The challenge was organised by a company called My Virtual Medal (myvirtualmedal.co.uk). You log your miles on a website that tracks where you are on the route. My friend and I had virtual tea and cake together in some lovely coffee shops and stayed in some very nice hotels along the way! Maybe one day we’ll visit some of these places in real life. I also dropped in for a virtual coffee with a friend who lives not far off the route as it enters Yorkshire! I did in fact call her up and we had a good old chat.

It couldn’t have ended in a nicer way. Towards the end of my run, on Tooting Common, my local stomping ground, I bumped into a friend who was also out running. His wife is a senior intensive care nurse at the hospital where I’m being treated. She’s been in the thick of it during the pandemic. Her husband and I hadn’t seen each other in person for a while and we stopped to chat.

Mid-catch up, a dog runs up to me and drops a ball at my feet. I recognise her immediately. It’s Ruby, our friends’ and neighbours’ beautiful black labrador. As it happens, I am chief ball thrower for Ruby when we’re out on walks with our friends. She’d clearly recognised me and wanted to play.

Her “master”, our friend Dave, wasn’t far away. How could I say no? I laughed and kicked the ball for Ruby while half-running the last few hundred metres of my run.

Coincidentally, Dave knows Robin’s Hood Bay really well and told to enjoy myself while I was there!

Dave is a good few years younger than me. He’s been living with Parkinson’s disease for ten years. I’ve mentioned Dave before in various posts. I had the pleasure of joining him and a group of friends last summer on yet another of his fundraising events for Parkinson’s UK – this time walking the Hadrian’s Wall Way during one of those periods when the pandemic restrictions were lowered. Dave’s a bit of a legend in the Parkinson’s community and in the world of darts, having been a presenter of Sky Sports Darts for many years. Check him out on Twitter at @daveclarktv.

While I was writing this post, Dave dropped off a prize – a memento from Robin’s Hood Bay (see photo) – for having completed the challenge. I love it!

Dave and I are among each other’s biggest fans, supporting and admiring each other through adversity. It was therefore lovely to bump into him and Ruby. However, it also felt quite strange, given that just a few minutes before, I’d been standing in front of a bench a few hundred metres away with tears streaming down my face.The bench is dedicated to the memory of a good friend of one of my sons, who took his own life last October. He was 21.

I’d known the bench was there but this was the first time I’d seen it. I’d looked for it before while out running but in the wrong place and coming across it at that point really took me by surprise. The bench was covered in flowers and looked beautiful. I had this most tragic of events in my mind* when I bumped into my running friend and Dave and Ruby soon afterwards. It all felt quite surreal.

I’ll finish by saying that it was good to complete the Coast to Coast challenge early. It meant I was able to finish it before I get the results of my latest set of scans. I had an MRI scan of my spine (the first in almost a year) and a near full-body PET CT scan the week before last (the first since last September). I get the results tomorrow. As we know, there’s no point trying to second guess the results. That said, if they show progression and I have to change treatment, it’ll be better to head into the next phase with a shiny new medal than with 60 plus miles of running and cycling left to go.

*If you’re in the UK and you or someone you know is struggling, you or they can get help from organisations such as The Samaritans (https://www.samaritans.org/) or CALM (https://www.thecalmzone.net/about-calm/what-is-calm/). It’s only by encouraging people – and men in particular – to reach out and seek help that we’ll make inroads towards lowering the numbers of those who see suicide as their only option.

An update

In the grand scheme of things, I’m quite relieved at the results of my latest round of blood tests.

I met the oncologist earlier this week to discuss the results of the tests I’d had done the previous day. The best I could have hoped for was for my tumour marker to have stayed at the level it had jumped to in December. I figured that was unlikely given that it had risen by a whopping 20% between the November and December blood tests. In the event, it went up by around another 10%.

On the upside, on the blood front things are good. The secondary breast cancer that has spread to my bones has also infiltrated my bone marrow and so reduces my body’s ability to make healthy blood. It was therefore good to hear that my haemoglobin count is up from last month and is again within the normal range, albeit at the very lower end. My neutrophils, while still below the normal range (they’ll never be there again), are 40% up on last month. That means I’m a little better placed to face any infection that comes my way – a positive in the current climate.

Once again, it’s swings and roundabouts. The tumour marker is up but bloods are ok.

With the pandemic still on the rampage, every effort is being made to minimise the number of trips patients on treatment make to hospital. For example, every other appointment with the consultant over the past nine months has been on the phone rather than in person. In fact, I may have had more over the phone than not. Some people don’t like this way of communicating but it’s fine by me. In addition, for my next two rounds of treatment, I’m going to self-inject at home the bone strengthening drug (denosumab/Xgeva) that I have at the start of every new cycle. It’s usually done by one of the oncology nurses at the day treatment unit at the hospital. I did it myself last month at the unit under supervision and that too was fine.

The fact that the marker is going up indicates that there is increased cancer activity somewhere in my body. That’s what happens with secondary cancer. It eventually outwits every possibly treatment. While these latest results were far from disastrous, you do have to be practical. The oncologist therefore discussed with me what drug(s) I might move onto if the scans I’m to have in seven weeks show signs that the cancer has progressed to the extent that we need to change to another treatment. The scans could show any number of things. While you can’t predict a precise course of action in advance as you don’t know what you’ll see, you can be thinking of what might need to happen under various scenarios.

The discussion was quite sobering. But let’s not pre-empt things. That decision – if indeed a decision needs to be taken – is eight weeks away. In the meantime, I carry on with my current treatment and just get on with things.

One of those things is reporting my health status daily on the Covid Symptom Study app – covid.joinzoe.com – that is used to study the symptoms of COVID-19 and track the spread of this virus that is causing such devastation and unimaginable heartache to so many. (On a personal level, next week will see the funeral of a good friend’s husband who died from COVID-19 just after Christmas. His death was heartbreaking on many levels.)

It seems heartless to carry on writing about my own experiences having just written those previous two sentences, but the case is that I reported having a runny nose on the Zoe app, as it’s known, one day last week. While a runny nose is not a symptom of infection with the virus, I, together with any other household members, was “invited” via the app to take a test. It was all very efficient. The test kits were delivered the day after we requested them, we posted them back the following day and got the results – negative in the case of both myself and my husband – 36 hours later via text and email.

I reckoned the results would be negative but, with transmission rates as high as they are, you can obviously never be sure. Our two boys are back at uni and so it’s just my husband and me in the house. I work from home so it’s been a few weeks since I’ve been out for anything other than to exercise or attend hospital appointments. In my husband’s case, it’s for exercise or shopping. I now exercise on my own; I’ve even stopped the walks with friends that had become such a regular and welcome feature of life.

I’m feeling well on the whole and another thing that I’m doing now that I don’t meet up with friends for walks is go out almost every day either for a run or a bike ride. The reason is that I have signed up to a bit of a mad challenge that involves running and/or cycling a total of 192 miles between the beginning of January and the end of March. I could do it all on the bike but I’ve decided to do as much of it as I can on my own two feet rather than on two wheels. Running is so much more challenging than cycling, at least it is for me given the pace at which I cycle. I run incredibly slowly but I guess it still counts as running in that I do overtake people who are simply walking!

There’s no way I’d be running if a friend hadn’t suggested we both sign up for this challenge. Even after having signed up, I’ve had to come up with an incentive to get me out running. I wanted to listen to Transmissions, a multi-episode podcast that I’d heard was really good – about the iconic Manchester bands from the 1980s, Joy Division and New Order. I decided I would only listen to the podcast while running. It was a good plan and it works both ways. I’m loving the podcast so much that I go out running so I can listen to another episode and listening to the podcast makes the runs easier.

This has been a good week for running. I’ve got the week off work, so I’ve got no excuse really. I’m in the category of people for whom work has never been busier and I worked part, if not all, of each of the four working days between December 24th and 31st. It has been so relaxing to have a big chunk of time off. The house is very quiet now that the boys are away again. We had a lovely Christmas together. It’s usually just the four of us anyway on Christmas Day so in that sense at least it wasn’t so different from other years.

The photo above on the left is of me on the 25th, relaxing on the sofa with two of my presents after an almost two-hour spin on the bike – out to Richmond Park, a favourite destination around seven miles away.

The photo on the right was taken in our garden by my husband not long after the bells on New Year’s Eve.

Hogmanay, as we Scots say, normally makes me feel quite melancholic. This year, though, presumably because of all the sadness that 2020 held, it felt important to celebrate and look forward – both because of and despite what the future may bring.

Back on treatment, feeling mellow

Thankfully the break in my treatment for secondary breast cancer lasted only five days.

I saw the consultant on Tuesday to find out how my blood was looking after the blood transfusion and filgrastim injection the previous week. The answer was good and I was straight on to my second round of capecitabine oral chemotherapy that very evening.

I’d had blood tests the day before. The results showed that the transfusion and injection did what they were expected to do on the haemoglobin and neutrophil front respectively. My haemoglobin count was up by a whopping 36% (it has to be said it was rather low to start with) and my neutrophil count had almost trebled.

Apparently the rise in the haemoglobin level could be accounted for partially by the fact that I’d been doing a fair amount of cycling. More on that below. Also, we don’t know how much of the fall was due to the new treatment and how much was due to the cancer. Whatever the reason, my haemoglobin was at a decent level.

The consultant is as pleased as I am about the big fall in the tumour marker level. The details are all in my previous post but, after just one cycle of capecitabine (two weeks of daily tablets), it had fallen by almost a third. While the chemo had a negative effect on my bone marrow function, it also clearly had a marked anti-cancer effect. The sooner I got back on treatment the better, the consultant and I agreed. The only objective of the breast cancer that’s already spread to my bones and infiltrated my bone marrow is to grow and spread further and cause even more havoc. You don’t want to leave that untreated any longer than is absolutely necessary.

I’m on the same dose of capecitabine as during the first cycle – 85% of my maximum possible dose, three tablets on the morning and four more 12 hours later. Because there was such a dive in my haemoglobin during the first cycle, I’m to have a blood test half way through this second cycle to check how things are going. So it’s back to the hospital – I’m lucky to live so close – first thing on Wednesday this coming week to have blood taken. The consultant will call me later that day, hopefully to say it’s ok for me to continue with the second week of the tablets. If things have gone awry again… well, we’ll face that bridge if we come to it.

I should have been back at the hospital on Thursday for my monthly injection of the bone strengthening drug, denosumab. However, the consultant brought the appointment forward so I wouldn’t have to make yet another trip to hospital that week. Instead I had the injection at the day treatment unit when I went to pick up my capecitabine tablets a couple of hours after having seen the consultant.

The consultant again emphasised the need for good foot care given the fact that a common side effect of capecitabine is the dreaded palmar-plantar or hand-foot syndrome, where your hands and feet can become red and sore and swollen. This, I’ve just found out, is caused when small amounts of chemo leak out of your capillaries, affecting, most commonly, the skin on your hands and your feet. Nasty.

So what does good feet hygiene entail?

To start with, plenty of moisturising, and, basically, socks at all times – even at home. Yes, really. No more padding about bare-footed  in the house, to lower the risk of getting small cuts that might get infected. No wearing flip flops or sandals that have that a strap that goes between your toes in case the friction caused by the strap causes the skin, which is likely to be fragile, to break. Given that I’m not prepared to walk round the house in trainers or shoes, that leaves me pretty much with the option of that footwear which is de rigeur for Young Folk but pretty much a criminal offence for anyone over the age of 30 – sliders and socks!

IMG_20200627_183057200We used to laugh at our dads for wearing socks with sandals but now it’s an art form. Even if it does become the norm for me indoors, I’m not sure I could ever own it quite to the extent our elder son is doing in this photo!

On the coronavirus front, my thoughts are now turning to when I might be able to go up to Scotland and see my mum and my brothers and their families. That would be very nice indeed. Our younger son gets access to his second year university accommodation in Leeds at the beginning of July. He’s keen to go up sooner than later to settle in and spend some time with his new housemates. I can’t say I blame him. A plan is forming; we could drive together up to Leeds, drop him off then drive on up to Scotland.

I don’t want to get ahead of myself but it’s nice even to think that I might get to see my mum again soon. I haven’t seen her since November. She’s in a care home in Glasgow that thankfully has managed to keep the coronavirus at bay, but she’s struggling with the lack of contact. My brothers up in Glasgow have been as brilliant as ever. They’ve “visited” regularly and talked to her, sang with her and played games with her through a slightly open window but it’s hard on everyone.

Going on a trip – if and when it happens – will be weird. Everyone’s experience of the pandemic is different but it has made a lot of people’s lives much smaller in a geographical sense.

In my case, my policy of “not shielding but being careful” and working from home means that until a couple of weeks ago I hadn’t been inside a building that wasn’t my own house for more than three months – excluding the hospital and the odd cafe for a takeaway coffee or cold drink when I’d been out for a walk or out on the bike.

Also, other than going on long bike rides, I hadn’t been travelling much further than a two-mile radius from the house. The only car journeys I’d been on until very recently were to the hospital, which is less than two miles away. I really should cycle there but I still can’t bring myself to lock my bike up at the hospital. I have PTSD from April 2019 when my bike got stolen outside the breast cancer centre on the very day my diagnosis of advanced breast cancer was confirmed. (Note to self: “You really need to get over that. Just make sure you have decent locks.”)

I know there are lots of issues and challenges regarding the loosening of lockdown restrictions. For me personally, it’s been a joy. Playing tennis in the sunshine with friends you’ve been keeping in touch with through WhatsApp or the odd Zoom call. Meeting up with friends on the common at the bottom of our road to share socially distanced coffees or cold beers or Prosecco on picnic blankets. Stopping off for cold water, a cup of tea and a chat at friends’ houses on the way back from bike rides on scorching hot days. And, more recently, an even bigger change, and all the more pleasurable for it – suppers with friends in their back gardens. One was local; the other I drove to. If it hadn’t been for the pandemic, we’d have taken public transport and probably got a taxi back; I’m not ready for either yet if I have the choice. I’m still being careful, like any sensible person.

IMG_20200627_134204830_HDRI’m four days into this second round of oral chemo and I’m feeling good. I’m writing this sitting on the sofa, feeling mellow and enjoying the view – of flowers inside and out, bike sheds and bins, and blue skies and clouds.

In my previous blog, I said I was going to put that blood transfusion  to good use by going on a long bike ride. Father’s Day dawned last Sunday, the weather was beautiful, and off my other half and I went – on a beautiful, flat and slow 100 kilometre cycle from home in Balham in southwest London into the leafy lanes of Surrey and back. It was my husband’s first 100k ride. Flat or not, that is a fair distance for anyone. I‘ve done a fair few rides of that distance and more, but I‘d be lying if I didn’t admit to being amazed and grateful that, with all this shit going on inside, I can still manage it.

We got back just in time to have showers before settling down to the classy Father’s Day supper our two boys had prepared while we were out. It was pretty much a perfect day.

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.