How’s this for awesome?

Here’s an update on the past few weeks. It’s mostly been more than good and a couple of really lovely things have happened to me.

If things carry on at this rate, I may well attempt to cycle the full 100-mile route of the Ride London event early next month.

Here goes.

First off, later today, essentially without there being a break from treatment cycle #2, I start treatment cycle #3 for the advanced breast cancer I was diagnosed with a few months ago.

At St George’s Hospital in Tooting in south-west London, I’ll have two injections of Faslodex (fulvestrant) in my buttocks, I’ll be given the bone-strengthening drug Zometa (zoledronic acid) via a drip in my arm, and I’ll start my next round of twice-daily Verzenios (abemaciclib) tablets.

Each treatment cycle lasts 28 days. I had to have a short break between cycles one and two and I feared there might be another one between two and three – or that we might have to reduce the dose of tablet that I’m on. I’d really rather not have either at this stage as there are some signs that the drugs are having a positive effect and I’m totally paranoid about doing anything that in any way, shape or form might reduce the effectiveness of the treatment.

The reason I had the break between the first two cycles is that abemaciclib had pushed my neutrophil count to below the level that’s considered safe to continue treatment. That’s still happening. To counteract that, I had to self-administer injections of a drug called filgrastim yesterday evening and the previous evening. I’ll do the same again half-way through and at the end of this latest 28-day cycle. Filgrastim boosts the production of neutrophils – the white blood cells that help fight infection – and I inject it in my belly area. I did much the same during chemo nearly four years ago.

Assuming this treatment cycle passes uneventfully, my next trip to the hospital won’t be until near the end of the 28-day period, when I’ll have blood tests in advance of seeing the consultant and hopefully get the go-ahead to start treatment cycle #4. In the time between the two injections, we should manage a ten-day family holiday in Spain.

Re the drugs having a positive effect, my blood test results from Monday show that my tumour marker levels are down – again. A decrease in marker levels during treatment can indicate that the tumour is responding to treatment. You don’t want to get too excited but that’s a positive early sign.

On the pain front, I haven’t needed to use painkillers for weeks now. I have been in no pain whatsoever for a good couple of weeks. I’m expecting potentially to have to take painkillers over the next few days as the fulvestrant and zoledronic acid can cause bone and joint pain.*

There have been some tough moments emotionally, when I’ve started thinking too far ahead. However, for now I’ve become a bit of an expert at pulling myself back to the present PDQ.

Now on to the subject of exercise. Since suggesting in my last blog post that I might take up swimming to make up for no longer being able to run or play tennis, I have been swamped with offers from friends and acquaintances to swim with them – outdoors!

In the past ten days alone, I’ve been for two early-morning swims at Tooting Lido, the big outdoor swimming pool near where I live. I’ve also been to an evening session of open-water swimming at the beautiful Shepperton Lake on the outskirts of south-west London. I’m due to swim again at Tooting Lido early tomorrow morning and at Victoria Docks in the Thames one evening next week. All new and lovely experiences for me. I don’t have the fitness to do front crawl for more than a few strokes at a time but breast stroke is fine.

On top of all that, I managed a 75-mile bike ride last Sunday, with two cycling friends. I thought it was a flat 100k route but we followed a friend’s route and hers was 120k! That’s made me think I should at least try to do the longer, 100-mile route of Ride London, the mass participation, closed road bike ride through London and the Surrey hills that’s taking place this year on 4 August. I got a place in the public ballot but when I started treatment in May, I didn’t think I’d even be in a position to attempt the shorter 46-mile route.

And how’s this for awesome? If you’ve been following this blog, you’ll know I was gutted at having to pull out of a big charity bike ride known as Le Loop that I was planning on doing in France earlier this month.

As part of Le Loop, I was due to cycle Stages 5-7 of this year’s Tour de France route a week before the real thing. A bunch of us from BellaVelo, the cycling community and club based in south west London that I’m a member of, had signed up to do various stages of the Tour as part of this big fundraising event.

It turns out that some of the BellaVelo women who did take part in Le Loop – often riding more than a 100 miles a day in ridiculously high temperatures – wore ribbons with the Scottish flag on on their helmets or bikes or even as hair ties while they were riding. Why? Because they thought it would be “a nice way to include you in Le Loop even though you were unable physically to be there”.

I’m still feeling so chuffed about that. What a kind gesture. That has to be up there with having had a sonnet written for me!

There’s more. Two BellaVelo members are currently riding every stage of the Tour de France the day before the pros. They’re part of a team called InternationElles and they’re doing this amazing feat to raise awareness of inequality in cycling. Anyway, what they’re doing is incredible and so demanding… but they took time out to send me a video of support. That was very cool.

Staying with the cycling theme, it was my 56th birthday recently and my husband gave me as a present a lovely framed photo of the two of us dressed up for an evening out… with a second option – of me with my bike and in full cycling kit – in case I get fed up with his first choice! In the one of me on my own, I’m standing at the top of Box Hill in Surrey. It’s a classic ride for south Londoners and we’d cycled there a few weeks ago to see whether I’d be able to do it. I was delighted that I could. My husband knows how much both photos mean to me. He is a star.

On top of that, on Monday I had the best evening out with three friends I’ve known since my early days in London. I’m the only one who still lives in the capital and this was a very hastily arranged get-together. They’ve been friends with each other since childhood and I’m the blow-in! It was a beautiful, fun-filled, life-affirming evening.

I could go on but I’ll mention just one more thing. A friend has given me a book called the Poetry Pharmacy, by William Sieghart. If you haven’t come across it, try to get a copy. It could change your life.

Plenty of other friends and family members have made other lovely gestures. I massively appreciate them all. I feel surrounded by kindness. People are amazing and it’s good to be alive.

*In the end, painkillers weren’t needed. There was no pain at all in my glutes after the injections and no joint/bone pain at all over the following days. 

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?