Living life with a new intensity… and Olivia Newton-John

It’s only June and already it’s been a busy year. I’ve gone skiing – twice, once with family and once with friends. I’ve been to Spain – also twice, once when I took my mum to Malaga for a few days, and then later to Valencia for a tennis weekend with some friends. I’ve been up to Glasgow – for work, but I made the most of it and stayed with my mum – and I’ve gone up to Edinburgh for a friend’s birthday party. I’m not finished yet; in less than two weeks, I’m off to New York to spend a few days with my beloved godmother.

I know my carbon footprint is massive with all these flights but my priority at the moment is seeing people who matter to me and spending time with them. I do look after the environment in lots of other ways.

20170531_004948 (4)You’re living life with a new intensity and you’re feeling good. You’re in a running club and on top of that you’ve joined a cycling club. You’re doing 10-mile runs (this coming Sunday, run number above) and 74-mile bike rides (last Sunday). You’re playing lots of tennis. You’re enjoying work. You’re “giving something back” by doing some volunteering with a couple of charities.

You’re hugely appreciative you have the means and the time to do all these lovely things. It’s all great fun but you’re not fooling yourself. You know that, having had breast cancer, the reason you’re so active is that your drivers are different from most people’s. You’re acutely aware of the fragility of life and of how quickly things can change and you know that you’ll never again take your health or your time here for granted.

It’s nearly two years since you were diagnosed with Stage 3a breast cancer. Your treatment went really well. You’re tolerating well the daily hormone therapy you’re taking to reduce the risk of your cancer coming back. You’ve got nothing to report to the consultant breast surgeon when you see him for your latest six-month check-up a couple of days before you fly to New York.

The thing is, once you’ve had breast cancer, it’s never really over. Just ask Olivia Newton-John, or rather Sandy from Grease, who announced a few days ago that the primary breast cancer she was successfully treated for 25 years ago – yes, you read that right, a whole quarter of a century ago – has come back in her spine. That pain in her lower back that she thought was sciatica was in fact metastatic or secondary breast cancer. And secondary breast cancer, while treatable, is currently incurable. Not that you’d know that from most of the reporting of the Newton-John news.

Everyone who’s had a cancer that can return deals with it differently. My way, for the moment at least, is not to leave for tomorrow what you can do today. I know too well that what’s just happened to Newton-John could happen to me at any time – tomorrow, next year, in five years or indeed in 25 (although I have to say if I’m still here and it comes back in 25 years’ time – at which point I’d be 78 – I reckon I’ll have done well).

Even if I hadn’t had breast cancer, the news about Newton-John’s recurrence would have been upsetting. As Rosie Millard writes in a brilliant article in The Independent newspaper, “the news that the Grease star’s cancer  has returned grips women of a certain age who grew up looking to her as something of a lodestar of our own happiness and maturation”. I saw Grease for the first time as a teenager in the summer of 1978 in Vancouver, where I spent the whole of the school holidays – courtesy of my great uncle who lived there – enjoying a freedom I’d never had before. The film hadn’t come out yet in Britain and so for a few months back home in Glasgow I had rare bragging rights among my friends!

Sandy’s transformation from good girl to bad scandalised and thrilled in equal measure us 14- and 15-year old Catholic schoolgirls. My mum didn’t approve of the film. I remember her telling me that she’d heard there was “a not very nice scene in the back of a car”! I bought the album. I’ve still got it. I know almost every word to every song. I feel I’ve been singing along to the soundtrack for much of my life. I even dragged my husband and some friends – some were willing and some were not so willing – along to the sing-along version as part of my 50th birthday celebrations a few years back.  And yes, we dressed up!

If you follow this blog, you’ll know I’m doing a 100-mile bike ride in July to raise money for a breast cancer research charity. One of the fundraising events I was planning to organise involved a showing of Grease. I’m not sure I’ll do that now. Instead of being a bit of a laugh, it would just be sad.

The fact that breast cancer can come back and kill is the reason I’m raising funds for Breast Cancer Now. One of the charity’s goals is that by 2050 no-one will die of breast cancer. I’m doing the Prudential London-Surrey 100, on Sunday 30th July. It’s a mass cycling event that starts at the Olympic Park in east London, goes out through the Surrey hills and finishes back in central London in front of Buckingham Palace. If you’d like to sponsor me, you can do so here: https://www.justgiving.com/fundraising/maureen-kenny.

My training’s going well and I’m really enjoying it. I’ll carry on living for the moment and as I’m struggling up a hill on my next practice ride I’ll spare a special thought for Sandy Olsson – or rather, Olivia Newton-John – as she gets on with this next challenging phase.

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And time goes by

I thought I’d more or less passed all my post breast cancer diagnosis- and treatment-related milestones. But then a few days ago I found myself having to put on a visor halfway through a game of tennis. It was a beautiful sunny morning but it wasn’t because of the sun. It was to stop my hair getting in my eyes.

I hadn’t had to do that since starting chemo in summer 2015. Don’t ask me how I managed it, but I kept playing tennis more or less all the way through chemo (Tennis II). I had eight sessions over 16 weeks. I lost my hair (Learning to live with a wig). I played with a wig on but of course it never grew so my fringe never got in the way.

I finished chemo at the end of November 2015. My hair started to grow back and I stopped wearing my wig just three months later, towards the end of February 2016 (In the end, the wig ditched me). It was very, very short at the time. Now, 16 months on from my last chemo session, I’ve lost count of the number of times I’ve had it cut. Given my experience on the court yesterday, it needs cutting again!

Summer 2015, though? That’s almost two years ago. I finished all the “big” treatments for my breast cancer  – chemo, mastectomy, radiotherapy – over 14 months ago and I still have thoughts every day about whether my cancer will come back. I find it hard to believe that anyone who’s had any kind of cancer that can come back doesn’t. If they exist, I want to know their secret.

But it’s ok. Thinking about something it is not the same as worrying about it. I don’t think you can stop a thought coming into your head. You can, however, decide what to do with that thought. You can dwell on it and let it worry you or you can acknowledge it, process it and send it packing if it’s not helpful. I now regularly do the latter, but it’s taken me a long time to get to this position of strength.

Time does indeed go on. I look back over the half dozen posts I wrote about recurrence last year in the months after my hospital-based treatment ended. I was clearly terrified and was convinced it was only a matter of time before my cancer came back and finished me off. That might still happen, of course. Indeed if I’m being completely honest, I have to admit that I still do expect it to come back at some point. But while I do still think about, I don’t worry about it, at least not in the almost all-consuming, anxiety-filled way I did then.

It’s still hard sometimes. You’ll have been fine for ages then there’ll be a “trigger” of some sort and you’ll be blindsided by a dark thought or a wave of melancholy that seemingly came from nowhere. When that happens, you have to just go with it and remind yourself that it’ll pass and that what you went through was really traumatic so it’s fine still to have big thoughts about it all.

With every little ache or pain I get, my first thought is still that it’s a late side-effect of the various treatments I had, a side-effect of ongoing treatment… or that my cancer’s come back and spread to wherever the pain happens to be. But while you can’t time or measure thoughts, I’m pretty sure these particular ones don’t last longer than a millisecond. If an ache or pain persists, well that’s a different matter; you have to get it checked. When someone suggests booking something for any length of time in advance, my first thought is still whether I’ll continue to be “cancer free” by then. That’s a big improvement on a year ago, though, when my first thought was not whether it would have come back by the time whatever we were planning came round but that it would almost certainly have come back by then. These days, as with the aches and pains, I force myself very quickly to move on and to focus instead on looking forward to whatever it is I’ve just booked. Life is good.

If my cancer comes back, it comes back. John Hurt, the great British actor who died of pancreatic cancer earlier this year, said: “We’re all just passing time, and occupy our chair very briefly.” We might as well make the most of it while we’re here. So here’s to life and to hair getting in our eyes.

This post is dedicated to the lovely Julie, my friend and tennis opponent from the other day who asked me how I was and in doing so inspired this post.

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.

 

 

 

 

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.

grafton
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!

Acupuncture, tennis, a haircut and going back to work

Good things are happening.

The biggest thing to report on the physical front – and this is massive – is that the peripheral neuropathy in my feet that was caused by the chemotherapy drug paclitaxel has improved dramatically over the past month.

Don’t get me wrong; that painful throbbing and numbness in the balls of my feet and toes is still there, but to a much, much lesser degree. It’s nowhere near as painful as it was and it’s now only very rarely so bad that I have to sit down and rub my feet to try and ease the discomfort. I used to have to do that pretty regularly. It no longer wakes me up at night. In fact sometimes it’s not even there when I wake up. This is still slightly disconcerting as I’d got so used to it; I wake up and lie there wondering what’s wrong and then I remember and savour the fact that it’s no longer there. It’s a lovely (non)feeling.

Now here’s the thing. This easing off of the chemo-induced peripheral neuropathy has coincided with my starting acupuncture. I know those of you who know me well will do a double take on reading that but, yes, I’ve had three sessions to date and I absolutely love it. Regardless of whether or not that has anything at all to do with the improvement in the nerve damage in my feet, I have to say I have never in my life felt as relaxed as I feel during those sessions. I have them through a lovely charity, The Haven. I did wonder what I’d let myself in for when in one of the sessions I felt a needle being placed in the middle of my forehead right where a “third eye” might be if we had one (think Cyclops), but by then it was far too late. It was half-way through a session and, anyway, I was so relaxed by that point that I really almost didn’t care.

Ironically, the peripheral neuropathy is now at its worst when I’m running. The last five minutes of this Saturday’s 5k Parkrun were a bit of a struggle.

There’s plenty more good news. I’ve been back on the tennis courts twice now, albeit playing with the soft balls children play with when they’re learning. You won’t be surprised to hear that it felt really, really, really – I could go on – good. It was fine in terms of my arm and shoulder and abdomen (where the big scar is), both when I was playing and in the following days. On a related matter, the cording in my chest and arm is really loosening up. While certain stretches are still painful, I’ve more or less regained full mobility in my arm and shoulder.

I’d asked the consultant who’s in charge of managing my lymphoedema when I met her a couple of weeks ago whether I should play. The swelling is currently only in the reconstructed boob and surrounding area (Looking forward to a “much more symmetrical overall shape”). If it develops in your arm, the consultant said, it’s as likely to be caused by (over)reaching for a tennis ball as it is from lifting a too-heavy shopping bag. Her advice then? “Do what you enjoy.” That was just the encouragement I needed. It basically confirmed what the consultant on the radiotherapy side of things had said a few months ago (Should I play tennis? “Yes, just don’t play Federer.”). A few days later, I enlisted my lovely doubles partner to knock up with me and the following week the rest of the stalwarts of the ladies doubles team I used to play for also obliged. (Thanks, Mary M, Mary P, Monica and Julie, and thanks to coach Steve who suggested the soft balls! Hopefully it won’t be too long before I’m whacking those hard yellow balls again and back playing in the team.)

There’s more. Five months on from finishing chemo, I need a haircut. That’s happening later today. And this last one is really huge… I start back at work tomorrow. It’s time.

That’s about it on the physical front. What about emotionally? Well, thoughts of recurrence are no longer always the first thing that pop into my head when I wake up in the morning. When they do, I tell them to sod off. Sometimes it works. That’s a big improvement.

 

Should I play tennis? “Yes, just don’t play Federer.”

As soon as I’ve recovered from my radiotherapy treatment and assuming I’ve regained sufficient mobility and strength in my right arm and shoulder, I plan to get back on the tennis courts. I was concerned that the movements involved in playing might increase my risk of developing lymphoedema but the consultant oncologist in charge of my radiotherapy reckons otherwise.

I’ve made no secret of my fear of developing this condition (Fear of lymphoedema) in my operated arm and I hadn’t been able to find a clear answer on whether tennis would increase the risk of getting it or not. I came across a biography of the consultant online and read that she played tennis so I asked her at our first meeting last week (Post-op progress report No 3: one month on and things are going well) whether, if she’d had the same surgery as me, she’d go back to playing.

The consultant’s answer? A definite yes, with a caveat, though: “Just don’t play Federer.” I wasn’t planning to, so I guess that’s fine. She reckoned the different kinds of movements you make with your arm and shoulder playing tennis don’t constitute the vigorous, repeated arm and shoulder activities that women at risk of lymphoedema are advised to avoid. This consultant says I have a 10-15% risk of developing lymphoedema; I’d been told before it was around 25%, so that was good to hear too.

The plan is for me to have radiotherapy every day excluding weekends* for much of February, starting on the 4th and finishing on the 25th. It should take me a while to recover from that and more in general from the overall battering my body’s taken over the past six months or so. And I guess this hardening of the lymph vessels, or “cording” (A busy week with welcome news – “no further surgery necessary”), in my right armpit and more recently also down my right arm will need to be resolved. Once that’s done, though, I should be able to start hitting tennis balls again. I’ll have to build things up slowly and take it easy at least to start with. I’ll still worry about lymphoedema, but with that encouragement from the oncologist perhaps not quite so much.

*Radiation affects the healthy tissue in the area being treated and the two-day pause in treatment each week is it allow your body to repair this damage.

Fear of lymphoedema

OK, so I’m worried I’ll develop lymphoedema at some point after my operation.

Now I’m willing to bet that most of you have never even heard of this “devastating disorder” and “dreaded complication” of breast cancer treatment. I’m not sure I had before my diagnosis, but I certainly have now. I’ve been told I have up to a 25% chance of developing the condition.

Any woman whose lymph nodes are affected by breast cancer treatment (ie through surgery or radiation) can get lymphoedema. It affects the arm on the side you had surgery. For me that’d be the right arm and I’m right-handed.

Patients with the condition can have “chronic, progressive swelling, pain, recurrent infections, and significantly decreased quality of life”. In most cases, lymphoedema develops slowly over time, and the swelling can range from mild to severe. It can develop at any time – even decades – after you’ve had breast cancer treatment; you can’t predict who’ll get it; it’s not clear if it can be prevented; and, once you’ve got it, it can be managed but it can’t be cured. It’s been said that it’s “one of the most poorly understood, relatively underestimated, and least researched complications of cancer or its treatment”.

There are lots of precautions you’re advised to take that might lower your risk of developing lymphoedema or delay its onset, or reduce its impact once you’ve got it. Note that it’s might, not will. No wonder women worry about it. In medical speak: “The lack of clarity for effective preventative measures likely contributes significantly to patient fear and anxiety.” As lymphoedema can develop years after treatment, it’s suggested you take the precautions FOR THE REST OF YOUR LIFE. It’s known that certain things definitely increase your risk, including putting too much strain on your arm too early, infection in a cut or graze and insect bites. So you’re advised to:

  • not use your arm for anything heavy until you are told you can.
  • wear gloves for gardening and washing up.
  • use an electric razor rather than a manual one if you shave under your arms.
  • take particular care with any cuts or scratches you get on your arm, however small. If you see any redness or swelling around the cuts or scratches, you’ve to see your GP straight away as you may need antibiotics.

There’s more. For example, use nail clippers rather than scissors and don’t push your cuticles back (does that mean no more salon manicures?); avoid anything that increases the temperature of your skin, such as hot tubs, saunas, steam rooms (not that I ever went to that many, but I guess that means goodbye spas); and use insect repellent (what, even in south London?). You’re also advised never again to have injections in the arm on the side you had surgery. Same goes for having your blood pressure taken and for having blood taken. There’s lots more, but I’m sure you get the picture.

And that’s all just to stop you getting it. You don’t want to hear about what you have to do to manage it if you do in fact get it.

And what about exercise? Well wouldn’t you know, more uncertainty.  There are risks to both exercising and not exercising. I’ll definitely be exercising, but where does that leave my beloved tennis and skiing? At this stage, I just don’t know.

Let’s take tennis. You can begin to go back to the activities you did before your surgery about four to six weeks after surgery or radiation, ie once you are fully healed. That for me, assuming all goes well, would be some time in April. However, you’ve to take care not to over-tire your shoulder and arm and you’ve to avoid “vigorous, repeated activities”. Isn’t that pretty much what tennis is? As for skiing, well lymphoedema can develop even decades after surgery “after seemingly trivial trauma”. Now I’m a pretty good skier, but I still fall (someone once told me if you don’t fall, you’re not trying hard enough!). There’s no way of guaranteeing I won’t fall on my right-hand side. So does that mean I stop going skiing? Or that I go but stick to beginners’ slopes? As I said, at this stage I just don’t know.

Medical advances will result in fewer women getting lymphoedema in the future. But this is now, so I guess I’ll just have to be careful and hope for the best. I’m sure a lot of the precautions eventually become second nature and that, as long as you can keep the condition at bay, taking them won’t seem the big deal it seems now. I really would like to still be able to play tennis and ski, though. Keep your fingers crossed for me.

I accept I’m perhaps worrying too much over this, and that perhaps I’ve transferred a lot of my anxiety over this whole breast cancer thing into a fear of developing lymphoedema. That said, up to 30% of women who have the surgical procedure I’m having – axillary lymph node dissection or axillary clearance –  do develop the condition. That’s quite a high percentage, is it not?