Topping off a lovely few weeks with my 100th Parkrun

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I never really liked running anyway

I’d always joked that I didn’t really like running. There was some truth in it. I loved how fit it made you, I loved how you felt after you’d been on a run and most of all I loved Parkrun – those free, weekly, timed 5k runs that take place in hundred of locations across the UK every Saturday morning. Since finishing treatment for primary breast cancer in February 2016, I’d also run a half marathon, a 10-mile run and a 10k and for a while I even trained with a running club. You don’t do all that if you genuinely don’t like running – but I always found it hard and I wasn’t a natural.

Then in March I got a pain in my spine and my right hip. I followed it up and it turned out I have secondary or metastatic breast cancer.

As well as there being cancer in my bone marrow and in three vertebrae, there is a lesion in my left-side rib area and there are “areas of less significant scattered bone disease”. As for my right hip, while there are no obvious signs of cancer in the hip itself, the pain I get there may or may not be related in some way to the diagnosis. Either way, that’s where there is most pain.

I suspected my running days were over but I hadn’t put it to the test. I needed to find out one way or the other.

Last Sunday morning, I plucked up the courage to give it a go. I put on my running kit, including for inspiration the Parkrun t-shirt I got for having chalked up 50 runs, and set off for Tooting Common at the end of our road. I went as slowly as I possibly could without it being considered fast walking. It didn’t help. It took just a few steps for me to know it wasn’t going to work. I’m not going to exaggerate; the pain was nowhere near excruciating but I just knew my hip couldn’t take it. My back, I could feel, would also start hurting soon.

I waited a few minutes then tried again. It still hurt. I tried once more, and that was it. I limped to a secluded spot on the common, sat down in the shade of a tree and proceeded to shed a bucketload of tears – of anger, frustration, sadness and self-pity.

So now I know for sure. Barring some weird reversal of the crap that’s going on inside my body, my running days are in the past. I guess I knew they were but I think I had to go through the motions. Maybe on some subconscious level I knew I needed a good, cathartic cry.

So much for getting a century of Parkruns. I made it to 86, which is pretty damn good. For those of you who may be thinking of suggesting I limp or walk the course 14 times just to get to 100… the answer is a big no.

It’s strange. On one level, I’m really disappointed but on another I’m already over it. Maybe I really didn’t like running that much anyway! More likely it’s because I know I have no choice. Or perhaps sometimes a good cry is just what’s needed to help you move forward. I’ll continue volunteering for Parkrun every now and then as I’m so grateful for what it has given me over the past three years. It was a key part of my recovery from my treatment for primary breast cancer and I’ve made new friends through it and had such fun. I ran all but one of my 86 Parkruns in the past three years, most of these on my home course on Tooting Common. I started it in earnest in April 2016 – six weeks after I finished radiotherapy – and never looked back.

On the positive side, I’ve restarted treatment. I had to have a short break as the drugs made my neutrophil count drop during the first cycle to below the level that was judged safe to continue with treatment. Neutrophils are the white blood cells that fight infection. Pharmaceutical intervention was needed to get them back up to the required level but we got there and here I am, back on track with Cycle 2. I have blood tests next week to check to see how things are going.

There’s clearly lots going on inside that I’m not physically aware of. But what about the things I am aware of?

Well, it sometimes takes some careful manoeuvring to get out of bed in the morning without too much pain. This is mainly due to the pain in my ribs – where there may also be cancer – that sometimes develops overnight and to the discomfort in my hip, which gets worse overnight, regardless of what’s causing it. My back is not generally painful but can start aching if I walk a good distance.

My hip hurts every time I get up from a seated position and take my first few steps. The pain generally wears off as I start moving about but a few people have commented that I sometimes walk with a slight limp.

The level of pain I have in the morning gives me a sense of how things will go over the course of the day. Overall I’m glad to say the pain seems to be diminishing.  I either take no painkillers (that’s the most common outcome at the moment), over-the-counter strength painkillers or prescription painkillers. The problem with the strongest ones is that you’re not meant to drink alcohol; the pain has to pretty bad before I take those!

The pain is at its worst by far in the days following the monthly Faslodex/fulvestrant injections and the Zometa/zoledronic acid infusion. Getting the injection in your buttocks verges on the painful side of uncomfortable and your glutes hurt like hell for a couple of days afterwards. The Zometa and the fulvestrant can – and do – cause bone pain for a couple of days afterwards too. Painkillers are most definitely needed then.

Also, I swear my hair is getting thinner by the day. Thankfully diarrhoea – a serious concern with the Verzenios/abemaciclib tablets I’m taking – has not been a problem. I’m not saying it’s been non-existent but it’s not been a problem.

I already knew tennis was out. Now it seems running is too. There’s still the cycling; I rode 62k yesterday, in glorious sunshine, the furthest I’d ridden since starting treatment in late May. I’m paying for it now as I’m absolutely whacked. Thankfully I’m not working today and, as Wimbledon is on, I have an excuse just to sit on the sofa and do very little other than watch amazing tennis on TV and finish writing this!

The question now is whether cycling is enough or do I need to seek out something to replace the tennis and running? Swimming anyone?

Legal doping and Hank Williams

I can personally attest that blood transfusions do indeed improve your cycling performance! Unlikely as it seems, I have become a legal doper.

I had some scheduled blood tests done on Monday with a view to starting my second cycle of treatment after seeing the consultant the following day. When I saw the consultant, however, she told me my haemoglobin level had fallen even further since my previous appointment. It was clear that a blood transfusion was the obvious option to help combat the anaemia that the low haemoglobin level was causing – even to me who’d been in denial as to whether it was necessary.

The secondary breast cancer I have is in my bones and bone marrow, with the latter affecting my body’s ability to produce the required amount of red blood cells. Red blood cells contain haemoglobin, which transports oxygen around the body.

A transfusion would mean I didn’t feel as tired as I’d been feeling these past few weeks. I’d been finding that if I went up the stairs too quickly, I had to stop at the top to get my breath back. I couldn’t rush anywhere – it was taking half as much time again as it usually did to walk to the the tube and from the tube to work. On Thursday, therefore, I spent the whole day at the hospital having two units of red blood cells transfused.

You’re meant to feel the effects of a transfusion pretty soon after having it. I therefore decided I owed it to myself to do Parkrun on Saturday morning. Parkrun is the free, weekly, timed 5k runs that take place in hundred of locations across the UK every Saturday morning. I’m a massive fan and while I haven’t run for months, I’m keen to start doing Parkrun again if I possibly can. However, I had a pretty strong feeling that even if I had the energy to run for 30 minutes plus, my back (there’s cancer in three vertebrae) and hip (the pain there may or not be related to the diagnosis) wouldn’t cope for more than a few hundred metres. So I knocked that idea on the head.

Come today, though, I decided I’d aim for a proper bike ride. Since May 19, I’d only been out on my bike a few times and I hadn’t cycled more than 10 miles. You get out of the habit pretty quickly so I did have to psyche myself up for it. Also, we were at a wedding last night (nails painted accordingly!) and this morning I wasn’t exactly raring to go. It was a beautiful day, though, so eventually I forced myself out the door.

Off I cycled to Richmond Park in south west London, did three laps then cycled back home, stopping only at lights and junctions and to take photos of the beautiful fawns in the park. I cycled almost 35 miles in total and surprised even myself. In fact, I would have done a fourth lap had I not wanted to make sure I got home in time to watch Andy Murray in the men’s doubles tennis finals at Queen’s. In the end he didn’t play until much later on so I could have gone ahead and done the extra lap.

Painwise I felt almost fine the whole ride – no hip pain, no back pain, and just a little pain in my left ribs (where it’s likely there is cancer).

I can’t say for sure but I really don’t know whether I would have been able to do that ride at the start of this week. I’m not sure I’d have attempted it. Of course I’m aware that even with the transfusion, my haemolgoblin will still be below normal levels, but it’s all relative.

As well as having a transfusion, I’ve also had to take a temporary and hopefully short break from treatment. I’m disappointed but the blood tests had also shown that my neutrophil levels had fallen during the first cycle to below the level that’s judged safe to continue with treatment. Neutrophils are the white blood cells that fight infection. We’ll do some more blood tests tomorrow and hopefully we’ll restart treatment on Tuesday. The break in treatment has also probably led to me feeling less tired as one of the drugs I’m on can also lead to anaemia.

I’ve written many times before that I had in effect resigned myself to being diagnosed with secondary breast cancer at some point. I was at high risk of it happening and that’s precisely what has occurred. Accepting that it might was part of my coping strategy.

I even had a headline planned for the blog post I would write if it came back. It was “The f***ing f***er’s f***ing back and I’m f***ed”. In the end, though, I decided not to use it. I went for the much plainer and much less crude and bleak, “It’s back.”

While the first part of my unused headline captures perfectly how I feel, I hope it’ll be a good while yet before the second part becomes a reality. As the wedding last night and today’s bike ride show, there’s still plenty of world out there to enjoy and plenty of wonderful people to enjoy it with. In the end, we’re all f***ed, aren’t we? To paraphrase the late, great American country singer Hank Williams, none of us is getting out of here alive.

Post-op progress report No 5: On very intimate terms with three new people

Fifteen sessions of manual lymphatic drainage later and things were looking a lot better. My reconstructed boob was much softer and less swollen, the swelling had all but gone in my right “flank” (I do like that word), the scar tissue that had developed after the operation was softer, and the tethering on the reconstruction had been massaged away to next to nothing. And I was on very intimate terms with three new people… or rather they were on very intimate terms with me.

More or less daily for three weeks in May, I lay there on a treatment bench in a room in the hospital for an hour at a time, naked from the waist up – yes, again (although there was a towel to cover me) – and gave myself over to the ministrations of one of three different MLD therapists. My initial scepticism about what might be achieved turned to admiration, fascination and surprise as the results started to show. And if you thought acupuncture was relaxing (Acupuncture, tennis, a haircut and going back to work), MLD takes you to another plane altogether. Within seconds of the therapist getting to work, I would feel myself starting to drift off. It was awesome.

So what is manual lymphatic drainage and how is it used in the treatment of lymphoedema? For yes, dear reader, that is what I have, in and around the operated area. Well – and all I’ve done here is copy and paste from the MLD UK website – in MLD “the therapist uses a range of specialised and gentle rhythmic pumping techniques to move the excess fluid into an area with a working lymph vessel system. This stimulates the lymphatic vessels and helps move excess fluid away from the swollen area so that it can drain away normally.” With me, the areas that the therapists manipulated were in my neck (that’s what sent me to sleep), my right and left flank, around my left boob, and all the way across the top of my upper chest and various parts of my back.

I felt quite low as the final sessions approached, firstly because the results were so good and secondly because the sessions themselves were so pleasant. I was taught how to do “self MLD” myself and I endeavour to do this every day before I get up to keep the swelling at bay. It’s not the same, though, as having someone else do it, for a whole hour at a time. Somehow it’s easier to cycle half an hour to the hosptial, have an hour-long session and cycle half an hour back home than spend half an hour doing it to yourself in the comfort of your own home. In a perfect world, I’d have my own private MLD therapist for use on demand!

So the reconstruction looks and feels a lot better than it did. But while the swelling is down, it hasn’t gone completely. And the tethering is back, although it is better than it was. Also, while the cording has improved, it’s still there. And it’s all still tender. And, somewhat disconcertingly, over the past week or so there’s been more pain and discomfort in the general area than there’s been for a while. Everything seems to tighten up overnight and while it eases off once I do some rubbing, massaging and stretching, the discomfort persists throughout the day. I don’t know whether it’s post-surgical pain or whether it’s the cording or lymphoedema or something else that’s causing it.

I’m now six-and-a-half months out of surgery and while they warn you that things “take time” to settle down, I somehow – probably naively, or even arrogantly – expected to be pretty much back to normal physically by now. But I hadn’t counted on cording and lymphoedema. The time seems to have flown by but I can’t help but be disappointed that at this stage there are still “issues”. I’m seeing the physiotherapist again the week after next after a bit of a break. That will help, I’m sure. It always does. I also have some more MLD sessions this coming week, which I’m hugely looking forward to.

Other things have also improved since my previous post-op progress report, in April (Post-op progress report No 4: Passing the Velux window test and “running” 5k). The horrible, painful tingling and numbness (chemotherapy induced peripheral neuropathy to give it its medical name) in my feet has all but gone. I’m so relieved at this. I hardly noticed it when I did my latest 5k Parkrun, yesterday – and when, by the way, I smashed my personal best by more than 40 seconds and came in at well under 29 minutes! I’m back to playing tennis regularly, and am delighted to be back on the ladies doubles team. Whatever problems I have with my arm and chest, it doesn’t affect my running or tennis. And I don’t feel the problems are caused by either.

The scar across my abdomen is continuing to fade – thanks in part to the fact that I massage Bio-Oil into it once a day and twice if I remember and can be bothered.

And I’m loving being back at work.

Over the next two weeks I’ll see the plastic surgeon, the breast surgeon and the radiotherapy consultant for two- and three-month reviews. I’m pretty sure they’ll tell me that as far as the discomfort and swelling is concerned, it’s still “early days” and that with stretching and physio and MLD and more time passing, things could still improve. That’d be good. I guess I’m just impatient.

 

 

 

 

Same run, but no tears this time

That’s two Saturdays in a row I’ve done the 5k Parkrun on Tooting Common here in south London. Last Saturday there were tears as I crossed the finish line; yesterday there weren’t.

I’d run 5k round the common once on my own (Passing the Velux window test and “running” 5k) since finishing seven months of treatment for breast cancer at the end of February. So as I set off last Saturday at 9am with around 250 other runners and with my husband Andy running beside me, I was confident I’d be fine. But I couldn’t hold back the tears as I crossed the finish line. I guess running the same route at the same time as all these other people – and knowing thousands others were doing exactly the same thing in Parkruns up and down the country – in some way made me feel I was back in the real world after having been in some sort of parallel universe since I was diagnosed last July. Andy – for the millionth time over these past months, it seems – provided a shoulder to cry on. Thanks also to our friend and neighbour Steve, who finished just before me and ended up with me crying on his shoulder too. Seconds later, I was fine again.

Yesterday there were no tears. I finished – two minutes faster than last week – with a smile and a feeling I was moving forward on the road towards my “new normal”, whatever that ends up being.

#iloveparkrun #keepitfree

Post-op progress report No 4: Passing the Velux window test and “running” 5k

I’m delighted to report two massive achievements in terms of my physical recovery from my operation and more broadly from my breast cancer treatment in general.

Firstly, on a beautiful, sunny Spring morning a little over a week ago, I managed to open the Velux window in our bedroom in the loft for the first time since my surgery last December. Secondly, just this morning, I ran five kilometres round Tooting Common. This was the first time I’d been out running since finishing chemo last November (and even then I’d only really gone running two or three times since starting chemo in August).

If someone had told me a year ago that I’d get excited about something as trivial as opening a window, I’d have said they were having a laugh. But here we are. We didn’t know then that I’d be recovering now from six months of breast cancer treatment that involved chemotherapy, major surgery (a mastectomy, full lymph node clearance and immediate reconstruction using blood vessels and tissue from my abdomen) and radiotherapy. We also wouldn’t have known that I’d develop something called “cording” in my right arm following surgery that would mean I was simply unable to grasp anything tightly with my right hand or indeed to straighten my arm and exert any level of pressure. This time last year I hadn’t even heard of cording.

Anyway, the fact is that I’d tried and failed to open the Velux window on many occasions since my operation three-and-a-half months ago, on 19th December, so I was delighted when I finally managed it the week before last. It hurt but I’d done it. It meant the cording was loosening up. It still hurts to do it now, but it’s easier every time.

As for my jaunt round the common today, it was very slow but I think it just about qualifies as running*. I’d asked the plastic and reconstructive surgeon at my most recent appointment with her whether I could start running again. She’d said yes so I kind of felt I had to get out there and put my money where my mouth was before I meet her again, on 12th April, for my next six-weekly review. Also, the Saturday morning 5k running phenomenon that is Parkrun has come to Tooting Common and I’ve been gearing myself up to do that. The plastic surgeon had said to double up on the upholstery front if I did go running (It’s not over ’til it’s over) so, this morning, supported by the Sweaty Betty crop top that I bought for my sailing trip across the Atlantic at the end of 2014 (What a difference a year makes) and a sports bra, I set off.

When I look back on those first few days and weeks after the operation when I could hardly move (Post-op progress report No 1: Biting off more than I can chew), I find myself totally in awe of the capacity of the human body to repair itself. (Yes, I know the human body is equally “good” at destroying itself but we’ll set that aside for the moment.)

I knew I was getting stronger as I’d caught myself running up the stairs in the house a few times in recent days. That’s how I went up the stairs as a matter of course before I started treatment but at some point towards the end of chemo, I’d started walking instead. I’d also at some stage gone back to getting out of bed the right way without thinking about it but I’ve gone backwards somewhat on that front recently. The swelling and tenderness in and around the breast area (Breast cancer “reminders”) means that when I wake up now I have to work out which way to move that will cause least discomfort. Also, I have to confess that I’m already stiffening up after my run and am feeling a like an old lady sitting here on the sofa. All in all, though, I’d have to say things are looking up.

*To illustrate just how slowly I ran, I should tell  you that Andy, not the world’s fastest runner, accompanied me round the common and said he’d to make a real effort to keep down (is that the opposite of keep up?) with me!