Approaching my two-year milestone with mixed emotions

The highest risk of recurrence for women who’ve had breast cancer is during the first two 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.”mo-parkrun-edit-2

“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 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. My husband 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.