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?

The “repellent strategy” of counting your blessings

I’ve just finished reading a novel in which the protagonist refers in the opening page to the “repellent strategy” of counting one’s blessings.

It’s as though the people who recommend you do this “really believe a dramatic loss can be replaced by the renewed appreciation of all that one has been given”, the character says.

I got what she meant immediately.

I’ve never been a fan of counting one’s blessings. I always felt it was akin to tempting fate. Before now, though, I’d never heard the sentiment expressed so articulately.

I think back to my state of mind for a good while after I completed seven months of treatment for Stage 3a breast cancer in February 2016.

Treatment consisted of chemo, mastectomy and radiotherapy and then daily hormone therapy – the whole caboodle. I’m at high risk of my breast cancer coming back and of it ultimately being the cause of my eventual demise. Have I mentioned before that breast cancer has an estimated rate of recurrence of around 30% and that around 11,500 women and a couple of hundred men die of this disease in the UK alone every year? Yes, you’ve mentioned it a few times, you say wearily. Well, from my point of view, it really can’t be said often enough.

Anyway, if you follow this blog, you’ll know that for a good while after treatment finished, I was in a high state of anxiety. I was convinced it was just a matter of time before my cancer turned up somewhere else in my body and started the process of finishing me off. There were plenty of good things in my life at the time, and I was well aware of them. However, the idea that simply focusing on them would rid me of my anxiety was laughable.

Tig Notaro is an American stand-up comic. Like me, she’s had breast cancer. She’s written about days when she could “only sit very still on my couch, trying to breathe. I felt like I was about to lose my balance and fall off not only the couch, but the planet entirely.”

I remember that feeling only too well. It wasn’t counting my blessings that helped in the end. Most fundamentally, it was acknowledging that this was a perfectly legitimate reaction to the traumatic events that I was experiencing. As newspaper columnist Annalisa Barbieri wrote just recently in The Guardian in response to a reader’s problem: “I think [advising you to] stop stressing about something that matters so much to you is asking a lot, and maybe you need to allow yourself to be who you are at this time.”

Scared was what I was and that was ok. Once I’d acknowledged that, I was able to take steps to deal with it all.

I knew that worrying was making me miserable and I desperately disliked being miserable. I realised that if my cancer did come back, I wouldn’t want to look back and see I’d spent the whole time between treatment and recurrence worrying. Also, and this to me was critical, it seemed that some people with far bigger issues than I had seemed to be coping better than I was. Of course, you don’t know how much someone is worrying unless they tell you but it made me realise there was no rule that said I had to worry myself sick over anything.

I took action. I talked to people about how I felt. I went on a course where I learned distraction techniques and devices for managing negative thinking and worry. I learned how to distance myself from my thoughts and I now have a good set of tools to help me fend off these bouts of fear, anxiety, dread – call it what you will – whenever they appear and whatever they’re about.

I still find the worry tree really helpful. I learned the importance of living in the now. “Today I am healthy, today I am well” is still one of my favourite mantras. Also, another health issue in the interim – microinvasive melanoma on my right calf – pulled me up short and made me realise the futility of worry. Worrying about one thing doesn’t stop other – potentially worse – things from happening.

And of course, exercise. Lots  of it, in my case. It’s always a massive help. Never fails to cheer me up.

Anyone who knows me knows I am extremely aware of, and grateful for, the many, many good things I have in my life. So how about some of the more important positives?

Last month I was signed off by the consultant dermatologist, having completed my one-year follow-up after being diagnosed with and treated for very early-stage melanoma last summer.

The chemotherapy-induced nerve damage I have in my feet hasn’t been anywhere near as bothersome these past few weeks as it’s been at other times.

My two teenage sons seem happy; sadly it seems that’s not a given these days among teenagers.

I couldn’t ask for a better husband… although I may change my mind on that later if he doesn’t bring something nice home for tea! Seriously, though, that is a very comforting thing to be able to say.

Finally, I’m fitter than ever – accounting for age, of course. I’m loving all the cycling, running and tennis I’m doing. My body let me down in the past, but for now it’s doing me proud. I took part in the Great Scottish Run in my home town of Glasgow last month (photo!) – running 10k in well under my target of one hour.

At the same time, life has its challenges. I won’t name them here but part of the key to being content is, I believe, accepting that ups and downs are normal. Also, it’s not all or nothing. You can be dealing with lots of problems and still be happy.

I think back again to when I was first diagnosed, back in July 2015. I’d walk down crowded streets thinking no-one else had a care in the world. I wanted to scream at people and tell them to wake up, tell them they had no idea how lucky they were, tell them to appreciate their good fortune. That was, of course, nonsense. By the time we’ve reached a certain age, most of us have “cares” of some sort or other, some far more serious than others. Most of us find a way of muddling through.

The main cause of my anxiety hasn’t changed, but my way of dealing with it – and with other potentially anxiety-inducing events – has. I can only hope my breast cancer doesn’t come back, despite me being at high risk of it doing so because of the stage it was at when I was diagnosed. I still think about that every day. Indeed there are days when I realise I’ve been thinking deep, dark thoughts for longer than is healthy. But it’s ok. I know what to do. Acknowledge the thoughts, remember they’re just thoughts, deal with them or actively move them away from the front of your mind and move mindfully on. And if they come back, just keep calm and do the same again until it works. Some days it takes longer than others to get back to “the now”.

Here are some examples of when distraction techniques are needed.

Every day I take a tablet containing letrozole, an oestrogen-blocking medicine whose ultimate objective is to reduce the risk of any breast cancer cells that may have escaped chemo and that are currently lying dormant somewhere in my body from becoming active. I get goosebumps every time I fill my repeat prescription. That’s another two months I’ve cheated this disease, I think to myself as I leave the pharmacy with my latest supply of little yellow pills.

That “I wonder if I’ll still be healthy then” thought comes sneaking in to mock me whenever I start thinking or planning too far ahead. It happened at work a month or so ago, when I heard we would be moving offices in early 2019. It happened more recently when some friends asked if we fancied going on holiday with them next February. And it happened again a few weeks ago when I put down a deposit for a cycling training camp in Spain next March.

March is five months away. In my world, that seems a long time. I take a calcium and vitamin D tablet daily to counteract the osteoporotic effects of letrozole. There’s been a mix-up with the prescription and I now have six months’ supply. That makes me feel quite uncomfortable.

This all makes you realise that so much of life is about planning for the future. If my cancer does come back, the fact I’ll have lost my deposit on a holiday or whatever will be the least of my worries so I may as well get on with enjoying the planning of it. I also realise how fortunate I am to be able financially to do these things.

And how about this? The book I quoted from at the beginning of this piece is called Unless, by the late, great Carol Shields. Reading some reviews after I’d read it, I discovered this was Shields’s final novel and that she died of breast cancer in 2003, not long after finishing it. I’d had no idea. The assumption is that she knew she was dying when she was writing this book that I so enjoyed. Finding that out really knocked me for six – especially when I realised we were at the same stage at diagnosis. Six weeks or so on from finishing the book, I still I find the whole thing really unsettling. Even writing this now, I have to make a real effort to stop my thoughts running away with themselves.

Also, many people including me were saddened and shocked recently by the sad and untimely death from breast cancer of the BBC presenter Rachael Hodges at the age of just 40. Tragedies such as these are, of course, desperately sad for the families and friends of the person who dies. On a personal level, though, you can’t help thinking that could have been – indeed could still be – me.

Rachael started a podcast with two friends who also have had or are having treatment for cancer called You, Me & The Big C – Putting The Can In Cancer. It was incredibly popular but I have to admit I could never bring myself to listen to it as I felt it was just too close to home.

It’s the same with those cycling socks that say “F**k” up the back of one and “Cancer” up the back of the other. I couldn’t possibly wear them. I’m still too scared of the beast to laugh at it or mock it.

So, in essence, happy to be here, loving life and all the good things in it. But never complacent or carefree, and always aware it could be snatched away at any time. I could count my blessings, but I’d rather not. Like millions of others, I’m just trying to deal as best I can with whatever life throws at me – the good, the bad and everything in between.

Approaching my two-year milestone with mixed emotions

The highest risk of recurrence for women who’ve had the type of breast cancer I had is during the first two to three years following treatment so it’s clearly a big deal that I’m approaching the two-year mark. I finished treatment at the end of February 2016 and while I don’t want to tempt fate by speaking too soon, the start of a new year seems as good as time as any to put a few thoughts on page.

In broad terms, risk of breast cancer recurrence reduces over time, but it never completely goes away. And – at the risk of folk complaining that I’ve said this a hundred times before – if it comes back away from the original site, it’s treatable but it can’t be cured and it’s therefore ultimately fatal. And I’m at high risk.

With the type of breast cancer I had, the risk falls after two years, and it falls again after five, which is why many survivors (for want of a better term) celebrate their five-year “cancer-free” date. If you plotted it on a graph, however, the “tail” would be never-ending. As many recurrences happen after the first five years as happen before (see Recurrence 1).

Some days I think about it a lot; other days hardly at all. For an example of the latter, take a couple of weeks ago – December 19th, to be precise. It was twenty minutes to midnight before I realised it that was the two-year anniversary of my breast cancer surgery. I was stunned – in a good way – that almost the whole day could go by without me being aware of its signficance.

This was particularly surprising as I’d been thinking at lot “about my breast cancer and me” – the subtitle of my blog – at around that time. Just a week earlier, I’d had the second of the five annual post-treatment mammograms and ultrasounds I’m to have. Everything was normal. When I saw the consultant breast surgeon for the results, we talked about the importance of the two-year milestone. He was clearly very pleased, but it really brought back to me the seriousness of the whole thing.

Almost every night before bed for the past two years – I really have only missed on one or two occasions – I’ve assiduously taken a little yellow tablet containing a drug called letrozole. There’s some evidence that this daily hormone therapy that I’m on to reduce my risk of recurrence should be taken for ten rather than five years.

So are we looking at staying on letrozole for ten years?, the breast surgeon ventured at that appointment in mid-December. I looked at him, my mind suddenly thrust into overdrive as I realised I was finding it impossible to think eight years ahead. I had to answer. Let’s take it a year at a time, I said.

It’s hard to speak in absolutes as no person is the same and, as I’ve said before, statistics are only statistics. That said, NHS Predict, an online tool that estimates how any one woman may respond to additional breast cancer treatment, suggests that taking letrozole reduces my risk of recurrence by almost as much as the chemotherapy I had.

For as long as I can, then, I guess I’ll be taking letrozole. Or rather, for as long as I safely can. It’s complicated. For the moment, I’m one of the lucky ones who seems to have minimal side effects. Lots of women come off letrozole and other similar drugs because the side effects – including fatigue, bone and joint pain, hot flushes – are debilitating.

Importantly, letrozole increases your risk of developing osteoporosis. We’ll be able to what effect it’s had on me on that front in March, when I have my first bone density (or DEXA) scan since starting on the drug in January 2016 (see One down, just 3,652 to go). A scan done at that time showed I had good bone strength, so at least we started from a high baseline.

Nearly two years out of treatment, I look back and feel grateful I’m still here. As for looking forward, well I do that too, if not with confidence, then at least with pragmatism and indeed enthusiasm.

For a while I found it very hard to look forward with anything other than fear. Gradually, though, things got better (see And time goes by). Then things then got complicated again, when I was diagnosed with very early-stage melanoma at the end of August last year (Melanoma? You’ve got to be kidding). At this precise moment, I’m recovering – extremely well – from a second round of surgery I had on my right calf at the end of November relating to that.

Eight years is a long time in anyone’s book, not just mine. I may not manage ever to look that far ahead, but that’s ok. The next few months are busy enough, starting with a big family reunion up in Scotland later this month.

On the sporting front, I’ve signed up to the Hampton Court Palace half marathon on March 18th and to a 66-mile bike ride round Loch Ness at the end of April. I’ve been out of action for a while due to the surgery on my calf (hopefully I’ll be exercising again by the end of this week), so getting fit for these will be quite a challenge. Unlike with cancer though, these are the kinds of challenges I love.

Here’s to the end of February and well beyond. Very best wishes to all for 2018.

What do you mean I look like a wreck?

This post isn’t new. I wrote it in mid-September for the Macmillan cancer support charity on the importance of exercise during my breast cancer treatment and ongoing recovery. I read back through it the other day and realised – to my astonishment, really – that nearly 11 months on I’m still seeing improvements from the surgery I had last December. Details will follow but in the meantime I decided I wanted this on my own blog for the record. I really like it; it’s nice and upbeat and it makes me smile. 

Here it is…

When the consultant breast surgeon greeted me at my most recent appointment with the words, “You look like a wreck”, I was more than a little confused. It seemed completely out of character and was, I thought, downright rude. More importantly, though, I was feeling really well physically and just couldn’t fathom why he’d say such a thing.

I’m fitter and healthier than I’ve been in years. Since finishing pretty gruelling treatment for breast cancer nearly seven months ago, I’ve been eating healthily, I’ve cut down on my alcohol consumption, and I’m exercising loads. As 53-year-old women go – never mind one who’s relatively recently been through cancer treatment – I think I’m doing pretty well.

“A wreck?” I said, trying not to sound put out. “But I feel great.”

“Not a wreck,” the consultant said, amused that I could think he’d say such a thing. “A rake! You’re fading away.”

I laughed at the misunderstanding and reassured the doctor that I was not in fact fading away. Since my diagnosis in July 2015, I have, however, lost the six, seven or eight kilos that I’d put on gradually over the previous decade. The consultant’s comment illustrates just how much I’ve taken on board the recommendations for healthy living that you’re advised to follow when you finish cancer treatment. Doing certain things, you’re told, reduces the risk of your cancer coming back. I’m at high risk of recurrence, so it’s perhaps not surprising that I’m trying to do everything I can to lessen that risk.

Initially I was ambivalent about the lifestyle changes I was making. I felt they were driven by fear of recurrence rather than by a genuine desire for change. But now I’m positively enjoying being fitter and healthier than I was pre-diagnosis.

I’m loving the extra exercise. I’ve always been sporty – tennis and cycling have been part of my life for years – but for the first time in my life I’m enjoying running. I’ve even joined a local running club.

I invariably feel better after exercise. During treatment itself, on more than one occasion, I felt it was my saviour. There were days when I’d be feeling tired and low and I’d force myself to cycle to the hospital or clinic appointment rather than drive. During radiotherapy I challenged myself to cycle to more sessions than I drove to. It wasn’t always easy, but I won – just! No matter how I felt when I left the house, I always felt better by the time I got to my destination.

When I did my first local 5K Parkrun in mid-April six weeks after finishing radiotherapy, I was both relieved and elated. Around 300 people did the same run that morning. I was amongst the slowest. Running the same route at the same time as all these other people, however – and knowing thousands of 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 in July 2015.

I had Stage 3a breast cancer and went through six-and-a-half months of treatment that comprised eight sessions of chemotherapy, a right-side mastectomy with immediate own-tissue reconstruction, lymph node clearance and 16 sessions of radiotherapy. It takes a long time to recover from that kind of treatment. The chemotherapy-induced peripheral neuropathy that I had in my feet is pretty much gone, but I still get the odd niggle, especially when I run (ironically). My upper arm on the operated side is still numb and there’s a feeling of discomfort in my chest and armpit that never quite seems to go away. There’s a little swelling in and around the operated area that’s been diagnosed as lymphoedema. Some days even now, I can feel really fatigued and have to take things easy. I’m on letrozole anti-hormone therapy and if I stay sitting for too long I feel my joints stiffening up. Hot flushes appear out of nowhere. In my right hand I’ve developed trigger thumb, a painful and annoying condition that can be caused by low oestrogen levels, which is precisely what letrozole is designed to achieve.

There’s no doubt that exercise helped and is helping me deal with both the physical and emotional effects of having had breast cancer. Everyone has their own way of coping, and exercise, it seems, is mine. There’s no downside as far as I can tell. I’m aware that what is a huge challenge for some is a breeze for others and vice versa. It’s about knowing what’s right for you and about setting achievable goals and not being overambitious. Exercising with friends or in a group can help.

For me, exercising is empowering. I’m fitter, I’m healthier, and over the past few months I’ve met some great new people. On the recurrence front, I know there’s no guarantee my cancer won’t come back. Exercising is a massive help in keeping in check my fear that it might.

 

 

 

When losing counts as a massive win

I was beaten two sets to one in a two-hour tennis match earlier today but I have no hesitation whatsoever in counting this particular loss as a massive win.

This was the first league match I’d played since I was diagnosed with breast cancer last summer. I carried on playing tennis throughout chemo but I dropped out of the leagues and this was my first league match in ten or 11 months. It would have been nice to win but the fact I was playing competitively again really was prize enough.

As you all know by now, the cancer was in my right breast and the right axillary lymph nodes. Given the type of surgery I was to have – mastectomy and removal of all the lymph nodes under my arm – I really was worried that my competitive tennis days might be over. My concern may have been misplaced but the fact is that some women who have their lymph nodes removed afterwards have long-term problems in terms of shoulder, arm and hand strength and mobility on the operated side. And I don’t have to remind you of how terrified I was of developing lymphoedema (Fear of lymphoedema).

I don’t appear to have problems on the mobility or strength front and while I have developed lymphoedema in and around the operated area (Looking forward to a “much more symmetrical overall shape”), there’s apparently no evidence to show that playing tennis increases the risk of it developing in my arm. At least two consultants have encouraged me to go ahead and play, as long as I feel up to it (Acupuncture, tennis, a haircut and going back to work & Should I play tennis? “Yes, just don’t play Federer.”). And so I found myself on court this morning.

The lovely Grafton tennis club in south London

It’s now five hours since the match ended and my arm and shoulder feel fine. And mentally I feel great, which is not usually how I feel when I lose, especially after winning the first set! There are still aches and pains and problems to solve in and around the operated area but it’s a huge relief that they don’t appear to affect my tennis-playing capabilities.

I lost 6-3, 4-6, 3-6. Not too shabby, all things considered.

Happy Bank Holiday Monday!

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!

Cycling challenges and lowering expectations

I’d been doing so well in terms of cycling to radiotherapy before I came down with this infection (It went downhill from there).

I’d first cycled on Day 4 (In the end, the wig ditched me). By the end of Day 7, I’d ridden to three sessions and had driven or been driven to four. Car 4 – Bike 3. Things were getting interesting. At some point during the third trip on the bike, I got the idea that it would be fun to aim to cycle to more radiotherapy sessions than I would drive to. At that point I had nine sessions left so it really wasn’t a tough target; I had plenty of leeway and I thought it might give me an incentive to cycle if I was feeling a lethargic or just plain tired. Then the infection took hold and while the goal is still achievable, it’s only just.

I’ve now had 11 radiotherapy sessions. The car has increased its lead over the bike and is winning 7-3 (I’m discounting from the car vs bike/me “duel” the session this past Friday when, for good reason, I used public transport). I came out of hospital last Wednesday and while I have been tempted to cycle on the odd day since then – particularly on Thursday, when it was such a beautiful day – I haven’t done so. I know I like a challenge but I’m not stupid and I knew I had to take it easy to give my body a chance to get over the infection.

So we’re at Car 7 – Bike 3. With just five sessions left, the best I can aim for is an 8-7 win. But a win is a win. To get it, I’ll have to cycle to radiotherapy every day this week. No pressure there. I’ve almost finished my course of antibiotics, I’ve had a very restful few days and so I’m up for trying. It’s a shame that on a couple of days the weather forecast is really not good.

Perhaps I should do as a friend suggests and just let it go. She could be right. There will be plenty more opportunities for cycling challenges. However, I’ve lowered my expectations over a good few things these past months, and as this is my final week of hospital-based treatment, there won’t many more of these particular types of challenges. I may be setting myself up for failure, but I’ve got to give it a go. I wouldn’t be being me if I didn’t.

I’m off to get my bike.