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.

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 convinced it was only a matter of time before my cancer came back and ultimately finished me off. That might still happen, of course, 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.

If cancer’s a gift, you can have it right back

Precisely one year ago today, I had my final radiotherapy session, thus ending the hospital-based part of my treatment for breast cancer. I couldn’t let the occasion pass without writing something. Here goes.

Each to their own, but I want to say for the record that it’s beyond me how anyone can view cancer as a gift.

Everything changes when you get a cancer diagnosis. “Whatever your prognosis, whatever your hopes, whatever your personality, the second that you know that you have cancer your life changes irrevocably,” says Peter Harvey, a now retired consultant clinical psychologist whose essay on life after cancer treatment is one of the best things I’ve read on the subject.

Yes, good things happened to me as a result of having had cancer. I met some great people, made new friends. A huge amount of love, affection and support came my way. I learned a lot. I wrote. And as you’ll know if you follow my blog, I’m enjoying the benefits of the positive lifestyle changes I made as a result of my diagnosis.

I accept that I’ve experienced to some extent what’s called post-traumatic growth, ie positive change experienced as a result of the struggle with a major life crisis or a traumatic event. But that’s not the point. I’d really far rather not have experienced the trauma in the first place.

You do come out the other end of your cancer treatment with a certain freedom you didn’t have before. Lots of things that I would have worried about before now just don’t bother me. On other levels, though, despite trying hard not to, I still sweat the small stuff. I still get annoyed at things I know are really not worth getting annoyed over. I’m very aware now that you do only live once but, trust me, I really haven’t had a big spiritual awakening like some people who’ve had cancer (I still can’t bring myself to use the term “survivor”) claim to have had.

A friend asked me a while ago if I thought cancer had changed me. In fact she may have said damaged rather than changed. I pondered the question and said I thought it had made me sadder. I’ve thought about it a lot since and I’d say that’s a fair assessment.

I’m aware the bottom line is that I’m alive. I’m hugely grateful to the doctors who treated me and to all the other people who had a part in my care. I’m hugely grateful to the family and friends who supported me during treatment and beyond. But that doesn’t mean I’m grateful I had a disease whose treatment is, frankly, brutal and leaves you at risk of serious side-effects for the rest of your life. I’m not grateful I now have to take anti-oestrogen tablets every day for ten years or more that increase your risk of developing osteoporosis and womb cancer. And finally, I’m not grateful I had a disease that can hide undetected in your body for years and come back at any point and ultimately destroy you.

One year on from finishing what’s called “active” treatment (“…3, 2, 1 and relax. Congratulations!”), I’m well into what Peter Harvey calls “the long, slow process of putting [your cancer] in the right box in your life – not forgetting about it, not denying its importance or power, not pretending it didn’t happen”, but incorporating it “into your own life pattern and experience in such a way as to not interfere and interrupt any more than it has to”.bad pressie

The impact cancer has on you as an individual is just one part of it, though. A cancer diagnosis doesn’t just affect you. It has a massive impact on those around you. Wouldn’t saying it was a gift be insulting to them?

Everyone has their own way of coping. If some people do that by viewing having had cancer as a gift, fine. As for me, I’m pretty sure I’ll never feel that way. I’m not sure I’ll ever want to feel that way. At most I’ll concede that if cancer is a gift, it’s one where you know the second you open it that you’ll be taking it back pdq to exchange it for something you actually like and are happy to take possession of.

 

 

 

 

 

Post-op progress report No 6: If this is as good as it gets, I’ll take it

I was at the cinema one evening in late October and towards the end of the film I became aware of something really weird. A couple of hours had gone by and I hadn’t felt the need to make any of the stretches or movements I’d been used to making regularly throughout the day to ease the feelings of discomfort in and around the area where I’d had breast cancer surgery more than ten months earlier.

Basically, nothing had felt wrong for at least two hours. I hadn’t felt the need to lift my right shoulder up and back to stretch out the tightening around the scarring in the area where my reconstructed right breast – which they made out of my tummy fat immediately after my mastectomy – meets my chest. I hadn’t felt the need to lift my right arm back behind my head and straighten it out to ease out the tightening or cording that’s still there in the armpit area where I had lymph nodes removed. I hadn’t felt the need to rub the inner part of my upper right arm to lessen the feeling of numbness and tingling I still have there, also a consequence of the lymph node removal surgery. Finally, I hadn’t felt the need to stretch out the tightness I still feel from time to time around the horizontal hip-to-hip scar where they took skin, fat and blood vessels for the breast reconstruction.

Ever since that evening at the cinema (My Scientology Movie, if you’re wondering), I’ve been noticing ever-longer periods throughout the day when all I can say is that nothing feels wrong and I’m not aware of any discomfort anywhere on my whole body. I’m still not used to it but, almost a year on from surgery (The basics), that’s what I call a result.

I wrote a blog for the Macmillan cancer support charity in mid-September on the importance of exercise during my treatment and ongoing recovery. I read back through it recently (What do you mean I look like a wreck?) and was amazed at how much things have improved physically even in the past two months or so.

So where are we now? Well I do still stretch out my shoulder and arm every so often during the day, though nowhere near as regularly as before. It’s far less uncomfortable than it was. I’m still having monthly physio sessions and those really help; I also still do stretching and strengthening exercises. The feeling is gradually coming back in that upper arm area; I still give it a good pummelling every now and then. The uncomfortable swelling in and around the operated area that was diagnosed as lymphoedema has all but gone; I still do a special massage in the affected area to help prevent the build-up of lymph fluid. Sometimes I’m aware of a general feeling of mild discomfort in the whole area but, more often than not, I’m not aware of anything.

What else? Well it’s only in the past couple of months that I’ve been able to sleep on either side or indeed on my front. Being able to sleep in whatever position I want after so many months of having to sleep on my back with my right arm stretched out behind my head is a really big deal. Having to stretch out the area around my abdominal scar is not a big deal; what 53-year-old woman is going to complain about having a tight tummy?!

There’s more. It’s been a good while since I’ve experienced anything like that fatigue I would feel from time to time that would make it hard to move very far from the sofa. It didn’t happen often, but when it did it wasn’t nice. Finally, I caught myself the other day running down the stairs on the London underground and diving onto a train. I’d stopped doing that as I was scared of falling or bumping into someone (Sod the compression bra, it’s summer!). Clearly not any more!

All in all, then, there’s been quite some improvement in recent months.

There’s stuff going on that’s related to treatment rather than to the surgery I had last December, but none of it’s too bad. The chemotherapy-induced peripheral neuropathy I had in my feet really is all but gone, although I still get some low-level tingling and numbness when I run or play tennis. It’s either that or my trainers are too tight! I’m tolerating letrozole, the daily anti-hormone therapy that I’m on, well. Letrozole can bring on hot flushes; for a couple of months these would appear out of nowhere but they’ve now subsided.

The “trigger thumb” that I’ve developed in my right hand is persisting. This is a known but rare side effect of letrozole, and it’s a bit of a drag. I can’t bend my right thumb and I’ve had to change the grip I use to serve at tennis and the way I hold a pen. My serve is neither better nor worse but my handwriting has gone from bad to appalling. It’s hard to do things where you need to apply pressure with your thumb – such as opening bottles and jars, tying shoe laces or using a grater – but it’s not the end of the world. I guess I could/should get treatment for it; instead I’ve just got used to it.

Finally, I sometimes wake up with stiff fingers on my right hand and my knuckles on that hand are a bit swollen – letrozole again. My rings don’t fit any more, which is a shame as I used to wear my late grandmother’s wedding ring and a signet ring I got for my 16th birthday on that hand. There’s no other joint-stiffening to complain of at the moment (I do have a painful left hip, but I’m hoping it’s nothing more sinister than a sports injury; I’ll get it checked out if it doesn’t go away).

This is my sixth post-op progress report and I reckon it could well be my last. The consultant breast surgeon told me that on the physical front we’d be doing well if I got back to 95% of what I was before. I don’t know quite how you measure that but if the way I am now is as good as it gets, I’ll settle for that and be quite happy. Now if someone could just give me a guarantee the cancer won’t come back, things would be just fine. But they can’t, of course. I don’t believe my “recurrence anxiety” will ever go away but in the meantime there’s no doubting these physical improvements are reasons to be cheerful.

 

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.

 

 

 

Laying to rest the ghosts of mammograms past (and making up for a cancelled bike ride)

I’ve had a couple of weeks of laying old ghosts to rest.

First of all, I got the results of the review of the clear mammogram I had in October 2014, nine months before my diagnosis with Stage IIIa breast cancer (The details) in July 2015. The review found nothing remotely suspect in the original images; nothing was missed. The tumour I had in my right breast therefore grew from nothing – or at least from being undetectable on a mammogram – to probably bigger than 5cm* and out into the lymph nodes in my right armpit within the space of eight or nine months.

Secondly, I did a two-day bike ride that a friend and I had said we’d do together once my treatment was over and I felt up to it. This was to make up for my having had to cancel a long-distance bike ride to Brussels last September as by then I’d started chemo.

Clear mammograms

The results of clear mammograms that are followed by so-called “interval” breast cancers – ie cancers that are diagnosed between routine mammograms – are reviewed as a matter of course and the women notified of the results. I don’t know how soon after the fact the reviews usually take place but a couple of months ago I went ahead and requested that mine be done.

I had two mammograms in the 18 months preceding my diagnosis, one in January 2014 and one later that same year, in October (So you think you’re breast aware). Both were reported as clear at the time and, following the review that’s just been done, nothing has changed. The consultant radiologist who went through the results with me two weeks ago yesterday said that the team of five reviewers, four of whom were also consultant radiologists, could see “no malignant features or subtle signs of cancer” in the images. The official classification is “Category 1: normal/benign features”.

At least now I’ve got the results. This had been on my mind ever since I was diagnosed. I can now draw a line and move on.

It’s hard to predict the rate at which tumours grow. My cancer was Grade 3, the most aggressive grade. I’d known it was possible for the tumour to have grown within the space of eight to nine months to the size it was when I was diagnosed (it won’t surprise you to hear I’d discussed it with my oncologist). Nonetheless, I found getting the results of the reviews very upsetting. I’d been proactive in ensuring I was screened. I thought I was pretty “breast aware”. I felt, however misguidedly, that to be diagnosed with Stage IIIa breast cancer (after Stages IIIb and IIIc comes Stage IV, which is incurable) after having had two clear mammograms was not just ironic but massively unfair. I’d been doing pretty well with the whole “looking forward, moving on” thing, but this brought everything back. I felt I was in the middle of it all again instead of almost seven months out of treatment. The consultant and the breast care nurse who was also at the meeting were very sympathetic.

Of course I’m pleased that nothing was missed. If I’m completely honest, however, I think that if things had gone the other way a tiny, tiny part of me would have been relieved that I could put at least some of the “blame” for my cancer having got to Stage IIIa by the time I was diagnosed on something or someone else other than myself. People have said I did well to act when I did but I will always wonder whether I could and/or should have acted sooner. The further I get from last July, though, the less I’m able to remember how long I might have been wondering whether something was wrong. Anyway, you can’t change the past but you can change how you feel about it. There’s no point beating myself up about something I can’t change.

I turned 50 in July 2013 and, instead of waiting to be called in for a routine mammogram under the NHS breast cancer screening programme, towards the end of the year I phoned and asked for an appointment. I had my first mammogram in January 2014. They kept me on the system and nine months later, in October, I had what would have been my routine mammogram.

Mammograms are no more than a snap shot of a moment in time and screening picks up around one third of breast cancers. Considerably more breast cancers are found by women themselves than are found through routine mammograms so what happened to me is not unusual. I do wonder whether having had two clear mammograms in relatively quick succession gave me a false sense of security. Also, I wonder at which point my tumour would have shown up in a mammogram before I’d have been able to feel it. What if I’d had that second mammogram three or two months or even one month later? Would it have shown up then, when it was perhaps at an earlier stage? If it’d been found earlier, my risk of recurrence would be lower than it is and perhaps I wouldn’t have had to have so much treatment. I know better than to dwell on thoughts such as these but I don’t stop having them in the first place.

Bike trip
There are only so many tears you can cry in one day so a few hours after getting home from the review meeting I finally called a halt to my pity party for one. pity-partyThat evening I headed off to the pub to meet my friend Juliette to plan the bike ride we’d be doing the following week in the New Forest in Hampshire. I’d done a 63-mile bike ride with Juliette just days before I was diagnosed and, at some point after I’d cancelled the long-distance ride to Belgium that was planned for last September, Juliette suggested we do a trip together the following summer to make up for it. bikesAnd so we did. And what a fabulous couple of days it was.

Getting the results of the mammogram reviews helped me put one ghost to rest. Two days last week spent cycling in the sunshine through forests and along coastal roads, and past ponies, thatched cottages and duck ponds, enabled me to put another one to rest. I’d been worried about how long it might be after surgery before I’d be able to cycle long distances again… or indeed whether I’d be able to do such bike rides at all (Stopping the downward spiral). So a huge thanks to Juliette.

yorkshire-dalesThere’s more. The day after I got the results of the mammogram reviews, Andy, the boys and I headed up to Cumbria and Yorkshire to join our friend Dave Clark on a 14.5 mile leg of the 200-mile coast-to-coast trek from the Lake District in the west of the country to Robin Hood’s Bay in the east that Dave had started out on a few days earlier. Dave was diagnosed with Parkinson’s five years ago. He’s just turned 50; I’ve mentioned him before (Don’t wait for the rain to stop, dance – or cycle – in the rain).

Dave completed the walk in 13 days (https://www.justgiving.com/fundraising/ClarkysC2C, #ClarkysC2C & http://bit.ly/2dswuyQ) in an effort that was nothing short of heroic, helping raise £100,000 for Parkinson’s UK along the way. I’m sure Dave has his dark days but every step of that walk was life-affirming and a lesson to us all that what matters is the present and that making the moment count beats the hell out of dwelling on regrets about the past or worries about the future. This post’s for you, Dave.

*While my tumour was estimated to be probably bigger than 5cm, we never found out the precise size because I had chemo before I had surgery. I had such a positive response to the chemo (A busy week with welcome news – “no mass identified” and “no further surgery necessary”) that by the time I had my mastectomy there was essentially nothing left of the tumour to measure. Can’t complain about that although at the time it did freak me out that I’d never know the exact size of the beast growing inside me.

Recurrence 5: How would you know it’d come back?

Your active breast cancer treatment finished months ago. You’ve had follow-up reviews with the doctors who’ve been treating you and they’ve all signed you off. Your first mammogram since you were diagnosed – just over a year ago now – is booked for December. You’re told to get in touch in the meantime “if you’re worried about anything”, which basically means if you think your breast cancer’s come back.

I don’t feel abandoned like some people do. In fact I’d like to be out of the system even more than I am. I still have stuff going on that keeps me involved one way or another: six-monthly cycles of a bone-hardening drug to reduce the risk of recurrence and lower my risk of developing osteoporosis; occasional physiotherapy for the post-surgery underarm cording that’s still there; occcasional treatment for the lymphoedema I have in my reconstructed breast; and a consultation in either three or six months’ time with the plastic surgeon to check the reconstruction.

So how would you know your breast cancer had come back? Well, just as most primary breast cancers are found by women themselves rather than through routine screening (So you think you’re “breast aware”), most breast cancer recurrences are found by patients between hospital or clinic visits. You make sure you’re aware of the symptoms. If you have them, you get them checked out and you find your cancer has either spread (to your bones or your liver or your brain or your lungs or your lymph nodes or a combination thereof) or it hasn’t. If it hasn’t, I imagine you breath a huge sigh of relief and thank your lucky stars. If it has, it must be one of the worst pieces of news you could possibly get. Your best hope then will be that it hasn’t spread too widely and that treatment is available that will keep it under control for as long as possible. As you’ll know if you’ve read my previous posts on recurrence, recurrent/Stage IV/advanced/secondary/metastatic breast cancer can be treated and you might live with it for years, but it can’t be cured. It’s currently ultimately fatal.

Frustratingly, some of the general symptoms linked to recurrence – being more tired than usual, low energy levels, feeling under the weather, poor appetite, weight loss, back pain, headaches, etc – are also caused by common illnesses or ailments. They can also be similar to ongoing side effects of treatment you’ve had for primary breast cancer, such as chemotherapy or radiotherapy, and to side effects of ongoing treatment, including hormone therapy.

Essentially you’re encouraged to report any symptoms that are new, don’t have an obvious cause or don’t go away. Some women who’re not long out of active treatment panic at every ache or pain and head off to their GP or the breast cancer unit where they were originally treated at the slightest twinge. At the other end of scale, some women initially downplay or dismiss their symptoms only to find the symptoms persist and their cancer has indeed spread. Both approaches are understandable. Let’s see which camp I’ll fall into. I can tell you I’ve already had a lump under one of my scars checked out; it’s scar tissue, “nothing nasty”.

Better to err on the side of caution, I say, and to persist if you really feel something is wrong. A new report on diagnosis of secondary breast cancer from the charity Breast Cancer Care exposes what it says are “shocking failings” in the system– patients being diagnosed in A&E, facing avoidable delays and having concerns ignored by healthcare professionals. The report also says over half (58%) of people with incurable breast cancer did not know how to spot the signs and symptoms of the disease. The infographic here* is aimed at helping people who’ve been successfully treated for primary breast cancer recognize the symptoms.

People are surprised to hear that generally the only routine follow-up test you have after treatment for primary breast cancer is an annual mammogram (or ultrasound too in my case – What does follow-up look like?). Mammograms don’t check for secondary breast cancer. They check, rather, to see whether you’ve developed a new cancer in the other breast or, depending on what surgery you’ve had on the breast that had the tumour in the first place, to see whether it’s come back there.

It’s quite hard to accept that there’s no way of knowing your cancer has spread before symptoms appear. There isn’t a test that can tell whether you have dormant cancer cells resting somewhere in your body, or that those dormant cells are about to activate and start spreading, or indeed have just begun to spread. No amount of tests will stop the cancer spreading and, as Cancer Research UK says, since no test can pick up microscopic cancer spread, a negative test doesn’t necessarily mean that there is no spread. In any case, again according to Cancer Research UK, finding out about cancer spread earlier often won’t change how your doctor decides to treat you. I have to say I was surprised to read that.

As I’ve said before (Recurrence 3), you do what you can to reduce the risk of your cancer recurring. You try to live healthily, you keep a watchful eye on your body, you comply with any ongoing therapy, and you go for your annual mammogram and ultrasounds and any other check-ups you’re offered. Ultimately, though, you have to learn to live with the fact that you’ll never know you’re going to remain cancer-free and that those symptoms, if they appear, could be very bad news indeed. At this stage, a year after my diagnosis and just five months out of active treatment, that still seems really unfair.

*This post is dedicated to Jo Taylor, a friend I met through the wonderful social media resource that is Twitter and who created this infographic to help raise awareness of secondary breast cancer. Jo is in her mid-4os, has secondary breast cancer and is a tireless campaigner on issues relating to the disease.  Jo (www.abcdiagnosis.co.uk and @abcdiagnosis on Twitter) has just undergone major surgery and deserves a massive shout-out. Recover and be well, Jo.