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.

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 3: Keeping my side of a really hard bargain

no wine ice creamAfter you’ve had treatment for breast cancer, you’re told to do certain things to reduce the risk of it coming back. Don’t smoke, cut down on your alcohol consumption or stop drinking altogether, eat healthily, keep to a healthy weight, exercise and keep fit and, for many of us, keep taking the daily anti-oestrogen therapy (One down, just 3,652 to go).

This is all good advice. Really it’s no different from what we’re meant to do anyway (apart, of course, from the hormone therapy). I do have a problem with it, though. It risks making women feel guilty ifblame they don’t manage to follow it – regardless of whether their cancer comes back or not.

I’ll do my best to keep my side of this hard bargain. No matter how well I manage, though, there’s no guarantee I’ll stay “cancer-free” (Recurrence 1 & Recurrence 2). As with getting breast cancer in the first place (How did I “get” breast cancer?), there are factors – some undoubtedly we’re not yet even aware of – over which we have little or no control.

So what am I doing to reduce my risk of recurrence? I don’t smoke, so that wasn’t a problem. I’ve always been active and done loads of sport but I’ve now started running regularly – not far, but at least I’m doing it. Also, I make a point of cycling to places where before I might have driven. So I’m probably fitter than I was before  I was diagnosed last July. I’ve also shed a good few kilos. I’ve gone from being a regular to an occasional drinker of alcohol… although I did make an exception for the few days I’ve just spent in Madrid (If planning a holiday is a clear sign of recovery…)! Finally, while I reckon I ate pretty healthily before, I have changed my diet quite substantially. I eat far less, for a start. I can’t bring myself to become a vegetarian but I have cut down on red meat and I’ve almost completely cut out processed meats – I very rarely now have things like bacon or chorizo, both of which I adore. I didn’t eat a lot of what I would term “rubbish” before, but I’ve cut out almost completely things like crisps and biscuits. We were on the coast in Norfolk for a few days over the Easter break and I didn’t even have an ice cream. Yes, I agree, where’s the fun in that?

I know these changes are all positive, but to be honest I’d feel better about them if they’d been driven by a genuine desire for change rather than by fear of recurrence.

A while back, I went to two pubs in one day – not my usual practice, I assure you. In one I had a coffee and in the other I had lime and soda. That would have been unthinkable before breast cancer. I’m sure it’ll wear off but I’m still at the stage where I have to force no funmyself not to be paranoid or judgmental about the drinking and eating habits of friends, family members and even random members of the public. I look at folk knocking it back in the pub or tucking into some really unhealthy food and think “I know where you’re heading”. If I’m not careful, I’ll end up healthier and fitter than ever before but I’ll be bloody miserable and a real party pooper!

 

“…3, 2, 1 and relax. Congratulations!”

I’d heard the radiographers count down from three then tell me to relax dozens of times during the 15 sessions of radiotherapy that I’d already had.

I’d to hold my breath seven times during each session as the radiation was delivered (A very strange position to be in (Radiotherapy Part 1)).  “3, 2, 1… and relax” was what the radiographers said through the intercom at the end of each hold to let me know I could start breathing normally again.

This time was different. It was Friday 26th February and it was a big day. It was my 16th and final radiotherapy session and it marked the end of the hospital-based phase of my breast cancer treatment. That’s why the radiographer guiding me through that session added “congratulations” after his final instruction to relax. Now for all I know they say that to everyone at the end of their last session. Regardless, I really appreciated the gesture. The moment deserved to be acknowledged. I’d been preparing for, having or recovering from treatment for seven months. Since last July, I’d had chemotherapy, major surgery involving a mastectomy, immediate breast reconstruction and axillary lymph node clearance, and finally, radiotherapy. Less than a month after I’d had surgery, my dad died. His funeral was in Glasgow on 1st February, I came back home to London on the 3rd and started radiotherapy on the 4th.

The day of that final session was an emotional one. I’d been in tears within seconds of waking up, from relief at having got to this point. I’d been expecting to burst into tears the second my last radiotherapy session was over but I was distracted by the radiographers chatting to me about how I felt the sessions had gone, asking about my plans for the rest of the day, getting me to sign the treatment completion form, warning me that the side effects from radiotherapy can continue to happen for another couple of weeks and giving me a leaflet about finishing treatment. My composure didn’t last long, though. I’d to have dressings reapplied to where my skin had reacted badly to the radiotherapy and I started to lose it as I walked from the radiotherapy suite over to the treatment room. Once inside, I sat down on the nearest chair and out it came. The tears only lasted a minute or two and I think I can be forgiven for feeling somewhat overwhelmed by the occasion. The radiography assistant who applied the dressings was very understanding. I guess they’re used to it.

There were more tears throughout the day when the enormity of what I’d gone through would hit me or I’d think of how different the day would have been if my dad had been around to share it.

I’m glad I waited a while to write this. I look back now and recall a lovely day. Cycling back from my appointment in the sunshine later that morning (Bike 8 – Car 7. Victory is mine.), I remember feeling immense gratitude towards everyone involved in my treatment. Just as I got back home I bumped into a neighbour I hadn’t seen for a while and we’d a bit of a chat. I got a massive hug from our cleaning lady. I had lunch with my tennis buddies, tea later in the afternoon with some good friends and lots of people got in touch to say congratulations. Andy, the boys and I finished the day off with our traditional celebratory family meal. You know the one (More good news)… lasagna, garlic bread and salad. This time the champagne was better than usual. We toasted ourselves and we toasted my dad.

In the end it was a day of huge relief and quiet celebration. It’s a day I won’t easily forget.

 

Bike 8 – Car 7. Victory is mine.

In the end, I did it. I cycled to every session of radiotherapy this week. That means that over the course of my radiotherapy treatment, the final phase of the hospital-based part of my treatment for breast cancer, I cycled to more sessions than I drove to. That means that in the duel that was being fought between the car and the bike, the bike won. The final score? Bike 8 – Car 7.

It started out as a bit of fun (Cycling challenges and lowering expectations) but then it became more serious. It became really important to me psychologically that the bike won.

20160226_121012-1 (1)The infection I’d had (It went downhill from there) set me back a few days. To secure a win, I knew I had to cycle the 11-mile round trip to the clinic every day of my final week of treatment. So that’s what I did. I cycled in the rain on the first day, last Monday (Don’t wait for the rain to stop, dance – or cycle – in the rain), and then the weather turned in my favour. It was cold, but there were beautiful blue skies for most of the rest of the week. By Thursday evening, we were even at 7-7. It was only by cycling to that very last session that the bike would win. Friday 26 February dawned clear and bright and off I rode, making it 8-7 to the bike. The photo is of me minutes after arriving back home from the clinic (thanks to the neighbour who took the photo!).

It seems fitting that my triumph on the bike coincided with the very last day of the hospital-based phase of my treatment. Six months of chemo, surgery and radiotherapy – it’s all over.

I’m not stupid; I know how symbolic the “duel” was. The bike was me and the car was my breast cancer. Put simply, my treatment has gone well. We got rid of all the cancer that could be detected. There can never be any guarantees that it won’t come back in or around the same area or turn up somewhere else in my body. For the time being, however, I guess you could say I’ve won. For now, that has to be good enough. Victory is mine.

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.

It went downhill from there

Not long after the excitement of getting back on the bike last Tuesday (In the end, the wig ditched me), things started to go downhill.

I’d been feeling really tired since starting radiotherapy towards the end of the previous week, on 4th February, but I started to feel physically unwell as well as tired last Thursday. Also, the reconstruction was looking red and more swollen than usual. Skin reactions to radiotherapy are common, but not that early in the programme; I was only five sessions in at that point. Things got progressively worse and they culminated in me being admitted to hospital this Monday evening – exactly half-way through my 16-session course of radiotherapy – for a short course of iv antibiotics to treat a rather nasty bacterial infection that I’ve developed of the skin and underlying tissue in and around the operated area.

I had a dose of antibiotics via iv injection every eight hours between arriving at the hospital late on Monday and leaving earlier today after I’d had the last of six doses (my doses were given at 10pm, 6am and 2pm). 20160216_063859The good news is that the infection is responding to the antibiotics. It hadn’t responded to a different antibiotic I’d been started on on Friday. I’m now back home, with a supply of oral antibiotics to take over the coming week.

I’m still tired – guess I’m stuck with that for a while – but otherwise I’m feeling almost fine. The extremely swollen, extremely red and extremely warm right boob is less swollen, less red and less warm than it was on Monday and the rash that covered nearly a quarter of my midriff looks much less angry and is receding. It really was quite impressive on Monday, but there are no photos, as there are things even I won’t photograph! Some areas feel a little sore and tender but it would hurt a whole lot more if I weren’t numb in most of that area following the operation back in December. Every cloud, eh?

For those who like details, I have breast cellulitis, a known but not common complication in women who’ve had certain types of breast cancer surgery. The consultant breast surgeon, who decided I should be admitted to hospital, said the infection needed to be cleared up “pdq”. (The consultant keeps trying to get rid of me but I keep coming back. I’ve now gone to him with one complication or another three times since he supposedly signed me off on 8th January, saying he’d see me in April for a three-month check-up.)

I’m aware this all sounds terribly dramatic. However, for most of the time I was in hospital – apart from the night I was admitted – I actually felt more or less ok, although you’d have found that hard to believe if you’d seen the infection.

This has been an interesting diversion in my breast cancer “journey” (I’m so sick of that term now). It has included:

  • two nights in hospital;
  • the best part of two days spent at home in bed with a fever and the shivers, either sleeping or just feeling really lousy;
  • another ultrasound scan, to see whether any fluid needed draining off – it didn’t;
  • a two-day break in radiotherapy while we got on top of the infection;
  • seeing two consultants who thought they’d seen the back of me for a while; and
  • more people than I care to remember examining my inflamed and burning hot boob.

I have had some lovely visits over the past couple of days… and the friend who came with me to hospital on Monday has finally accepted that I do have something serious wrong with me and that I haven’t just been slacking all these months!

I’ll start back at radiotherapy tomorrow. Coincidentally, it turns out that the machine was down both today and yesterday, which means I wouldn’t have had the sessions anyway. Maybe there was so much heat coming off me during my session on Monday that I caused the machine to shortcircuit! To make up the two missing sessions, I’ll have one this Saturday (they’re running Saturday sessions to work through the backlog) and they’ll add one on at the end. Assuming all goes to plan from now on, my final radiotherapy session will be on Friday 26th February.

Onwards and upwards.