My final Zometa, a bone density scan and a – clear – biopsy

It’s been a busy couple of months, here in cancer survivor land.

I had my two-year “no evidence of disease” anniversary at the end of February.

Since then I’ve had my final cycle of Zometa, a drug I’ve been taking periodically since finishing active treatment for Stage III breast cancer in November 2015 in the hope that it will reduce the risk of my breast cancer spreading to my bones. I’ve also had a bone density scan that assessed the impact on my bone strength of the anti-oestrogen tablets I’ve been taking daily for more than two years now. That was fine. Finally, I’ve had a biopsy done on a lump in the breast where I had cancer that turned out to be nothing more sinister than – essentially – dead, hardened fat.

My two-years-out-of-treatment anniversary was an anticlimax. I’m not sure what I was expecting but the day – February 26 – came and went, uneventfully.

My final cycle of Zometa in early March was a different matter.

Zometa is the brand name for zoledronic acid, a medicine that belongs to a group of drugs called bisphosphonates. Among other things, it’s used to help prevent breast cancer spreading to the bones in women who’ve been treated for the disease and are post-menopausal. I’m one of those, and I’d been having Zometa initially on a three-monthly and then on a six-monthly basis since my final chemo session in November 2015. I had to go to hospital for it as it’s given as an infusion, ie via a drip.

Walking out of the hospital after my final session, I was completely blindsided by a wave of utter panic. I remember walking along the long corridor to the exit feeling like a support had been kicked away from me and that all that was now between me and a recurrence were those little yellow letrozole tablets I take every night before I go to bed. I was, literally, panic-stricken, but I knew what to do. I know it sounds a bit new-agey, but I stopped, acknowledged what was happening, thought about it for a couple of minutes, then gathered myself and moved on – physically and emotionally. I knew that the benefit of Zometa is in the first three years – this final cycle just about takes me up to three years. My oncologist had already talked it through with me and I knew this was to be my last cycle. It was good to be at this stage. I just hadn’t expected to have this reaction. I’ve said before, you can be fine for ages and then out of the blue something triggers a response like this.

As for the bone density scan, I’m delighted to report that things are pretty much unchanged from the “benchmark” scan I had in December 2015, just before I started taking letrozole. This medicine works to lower oestrogen levels in the body and so increases your risk of developing osteoporosis. My “score”, though, has remained normal. I guess that’s down to a combination of things – including the Zometa infusions (this drug is also used to counteract the oestrogen-depleting effects of letrozole on the bones), the calcium and Vitamin A supplements I take daily (also designed to strengthen bones), and all the weight-bearing exercise (running and tennis) I do. And probably also to some extent the luck of the draw.

Assuming everything continues to go well, I won’t have another bone density scan for another two-and-a-half years, at which point I’ll have been taking letrozole for almost five years.

Around 80% of breast cancers are what’s known as oestrogen-receptor positive (or ER+). This means they need oestrogen to grow. The idea is that, by taking letrozole, any slow-growing or dormant cancer cells that may have survived chemotherapy (and/or radiotherapy) are starved of the oestrogen they need to grow and so they slow or stop growing and/or spreading to other parts of the body. Fingers crossed.

Now on to the biopsy.

I’d noticed there had been a change in the lump of scar tissue that had been there for a long time in my reconstructed boob under a scar from my surgery in December 2015. I’d had a right-side mastectomy, immediately followed by a reconstruction made essentially out of my own stomach fat. A “DIEP flap” reconstruction involves taking excess skin and fat from the stomach to reconstruct the breast. The lump of scar tissue was under one of the scars where the “flap” of abdominal skin is attached to the original skin of the breast.

Anyway, that lump had got bigger and harder and was causing some skin tethering. I decided to mention it to the consultant when I went to get the results of my bone density scan towards the end of last month. She had a good feel and decided the best course of action was an ultrasound scan. After doing the scan and quizzing me about the changes I’d noticed, the radiologist decided the best course of action was to biopsy the lump. There was no point in doing a mammogram as there’s next to no breast tissue there; it’s all tummy fat.

For my part, I decided the best course of action was to try and persuade myself not to worry in the period between having the biopsy taken and getting the results this past Tuesday. The worst-case scenario was that it would be a local recurrence of my breast cancer. Nobody had suggested that I prepare for bad news, but there’s always a sneaking doubt. After all, medical tests aren’t for checking that everything’s ok; rather, they’re to try and find out if anything’s wrong. That’s not just semantics, believe me.

I largely succeeded in my task. However, the fact that I kept my worry under control doesn’t mean I assumed things would be ok. Taking things for granted is a luxury I no longer have but I knew that worrying was not going to change the outcome of the biopsy. Of course I thought about it and of course I had visions of what my mind thought my life might be like if it were a bad diagnosis. But I’ve learnt not to dwell on negative thoughts – at least for not too long at any one time. It’s not always easy, but in terms of managing negative thinking, I’ve come a long, long way.

In the end, it turns out the lump is scar tissue, as we already knew, and fat necrosis, which is new. It’s not unusual for fat in reconstructions such as mine to harden.

At the end of April, a few days before I had the ultrasound, I went up to Scotland and, along with some some 6,000 other cyclists, did the Etape Loch Ness, a 66-mile, closed-road bike ride round Loch Ness that I’d signed up for last October.

What a stunning bike ride and what a beautiful day.

It was especially nice to do it with two of my brothers. I also managed to raise a few hundred pounds for Macmillan Cancer Support, which can only be a good thing.

Amid all this, I don’t think it’s an exaggeration to say a war has been raging in the media here in the UK over the value of routine breast screening.

The heated debate was prompted by the news that over a period of several years a computer flaw had led to up to 450,000 older women in England and Wales not being invited for what should have been their final routine NHS screening. Computer modeling suggested that up to 350 women may have had their life expectancy shortened as a result.

The experts had a field day. Some cried scandal and demanded that every single one of the affected women who were still alive be called for screening as soon as possible. Others insisted screening did not save lives overall and said that women who missed appointments should “carry on with their lives” and only contact their doctors if they experienced symptoms indicative of breast cancer.

No wonder people are confused and angry. It’s hard to accept things aren’t always black or white.

As for me, I’m not taking any chances. I’ll be going along to the next scheduled mammogram on my healthy breast, in December.

I hope things are quiet between now and then – and indeed that they stay that way.

 

Advertisements

A half marathon and feeling grateful

There I was at 10am this morning, running along the banks of the River Thames in the freezing cold, trying desperately to focus on something other than 1) just how bitterly cold it was and 2) the residual peripheral neuropathy I have in the balls of my feet and toes that’s a side effect from the chemo I had as part of my breast cancer treatment well over two years ago.

Peripheral neuropathy is a horrible mix of numbness and pins and needles; I’m mostly just vaguely aware of it but it gets considerably worse 1) when I’m running and 2) when it’s cold. It’s worse on my right foot than on my left.

Bit of a double whammy on the foot front, I was thinking as I ran.

I was only a couple of miles into the 2018 Hampton Court Palace Half Marathon and I knew it was going to go badly if I didn’t manage to divert my thinking to something more positive. So I started thinking about all the people who’ve helped and supported me through what I can only call the shitstormy periods of the past two and three quarter years.

Don’t get me wrong, some of that time has been brilliant. In fact, quite a lot of it’s been brilliant, but some of it’s been pretty damn tough. But it would have a lot tougher without the amazing support I’ve had, from many, many different people. Thinking about all that cheered me up no end. I started writing it all down here but it was getting so long that I decided it deserved its own blog post.

So what’s gone down over the past (almost) three years? Diagnosed with Stage III breast cancer (Stage IV is treatable but ultimately terminal) in July 2015, followed by seven months of treatment involving chemo, mastectomy and lymph node removal, and radiotherapy. High risk of recurrence and many, many months post-treatment trying to find a way of transferring my fear of recurrence from the front of my mind to somewhere less harmful. It’s sometimes still an issue, in fact. [The Scottish comedian Billy Connolly helped recently on that front. He’s got Parkinson’s disease and I heard him say not too long ago that his condition is the first thing he thinks about every morning when he wakes up so he makes sure his second thought is something nice. I bear that in mind when I feel that fear of recurrence creeping back.] Then, late last summer, just as I felt I was really moving on, I was diagnosed with malignant melanoma. Thankfully it was very early stage, but it involved two rounds of surgery to my right calf which amounted to several months of enforced inactivity.

Back to this morning’s run. Having spent an uplifting however long thinking how fortunate I was, I then focused on the fact that I was able to even contemplate doing this half marathon was cause for celebration. The wound from the surgery I had on my calf at the end of November had healed so well that I was able to start running again in mid-January.

There are a lot of people to thank for a lot of things, as you’ll be able to read when I get round to writing them all down. Special thanks, however, goes to my husband Andy, who surpassed himself today – as he has done so on so many occasions over the past few years. Not only did he drive me to Hampton Court Palace this morning at 7.45am, he also came to pick me up at the train station on the way home –  with a flask of steaming hot soup. I can’t describe how welcome that was. To give you some idea of just how cold it was, it took me 20 minutes after I’d finished the half marathon before I had enough feeling in my fingers to be able to use my phone.

Andy would have been to cheer me over the finish line too but I’d said I didn’t want that.

As everyone will know, the brilliant astrophysicist Stephen Hawking died this week at the age of 76. He’d been diagnosed with a rare form of motor neurone disease as a young adult and was told he’d be dead in a couple of years. He’s quoted as saying: “My expectations were reduced to zero when I was 21. Everything since then has been a bonus.”

I was 52 when I was diagnosed with breast cancer. My expectations were far from reduced to zero, and not everything since then has been a bonus. I’m pretty sure it wasn’t for Stephen Hawking either after his initial diagnosis. Having run a good part of 13.1 miles this morning contemplating the good things in my life, though, I know where he was coming from.

Approaching my two-year milestone with mixed emotions

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Melanoma? You’ve got to be kidding

If you focus all your energies on one particular worry – in my case that the breast cancer I’d been treated for successfully might come back – you kind of forget about all the other serious diseases you could get. Such as melanoma. Or to be more specific, malignant melanoma. Yes, that’s right, skin cancer. And not just any skin cancer; malignant melanoma is the “rarest but the most serious of all skin cancers”.

I have just had a malignant melanoma removed from my right calf. A large, dark brown patch (about 1 cm x 1.3 cm) that I swear had been there for as long as I can remember was in fact very early stage skin cancer. Having cancer once is bad enough. But twice? That’s not carelessness, as George Bernard Shaw might have said. It’s just rubbish. Luckily, this cancer was caught at a very early stage; that means there’s very little chance of it coming back or of it having spread.

I’d spent (wasted?) countless hours since I finished treatment for primary breast cancer at the end of February 2016 worrying about the possibility my breast cancer might come back and that I’d ultimately be one of the more than 11,500 women who die of the disease in the UK every year. I’m at high risk of recurrence because of the stage my breast cancer was at when I was diagnosed (Stage 3a). Following a lot of effort, I’d more or less succeeded in putting my fear in a box in my brain marked “do not disturb” and firmly shut the lid. Emotionally, I was moving on very nicely. Physically, allowing for age, I was probably fitter than I’d ever been. I’d done a 10-mile run in June and a 100-mile charity bike ride at the end of July (Job done).

In short, I was feeling great. Then, not even a month after the bike ride, I’m hit with a melanoma diagnosis. That was really not in the plan.

I was aware this “irregularly pigmented lesion” on my leg was there but at no point, I repeat at no point, did I think it might be anything nasty. So much for awareness. A colleague at work noticed it and remarked that it was “big”. That set alarm bells ringing. I got an appointment with the GP, who referred me to a consultant dermatologist. Unlike the breast cancer where I suspected the worst by the time I consulted a doctor, at no stage this time did I seriously think there might be something wrong. However, when the consultant examined me, she diagnosed the lesion almost immediately as “probable melanoma”. She didn’t mess around with a biopsy that would have confirmed it one way or the other. Instead, she had a plastic surgeon remove the suspect patch and an area of surrounding skin and tissue – in a procedure called a wide local excision – that same day.

Not only that, the dermatologist had the surgeon take some skin from another, much lighter, area on my upper left chest near my collar bone to be biopsied.

The patch on my leg turned out to be very early – Stage 1a (at least I think it is, I’ve worked that out myself) – melanoma. The patch on my chest turned out to be clear.

Melanoma’s not like breast cancer where we know what the risk factors are but don’t know precisely what causes it. It’s pretty much accepted that the leading cause of skin cancer by far is exposure to ultraviolet radiation from the sun and sun beds or lamps (surely these should be banned?).

I guess the seeds were sown in my childhood, youth and young adulthood. I was a pale Scot with lots of freckles who burned easily. But I tanned and I loved the sun, loved sunbathing and loved getting a tan. I studied French and Spanish at university in Glasgow and spent my summers in the south of France, the Costa del Sol or Mallorca. I followed this with three years in Madrid. Severe sunburn, blistering, sun beds – been there, done that. We’re stupid when we’re young, aren’t we? In fact a lot of us are still stupid as adults.

In later years, I started appreciating the risks more and became so much more responsible. I couldn’t have been more careful. I’m 54 now and, while I still love the sun, it’s been decades since I’ve done what you would call sunbathing, ie deliberately lying out under a hot sun for hours on end. I would love to lie out, but I don’t. It’s as simple as that. I am so careful. I’m outdoors a lot (tennis, cycling, running) but I always splash on the sun cream – most often Factor 50 and, if not that, Factor 30 (why is there no Factor 40?). I’m the one who’s always offering sun cream around and my two sons will tell you I’m a real nag on this particular issue. They’ll tell you I’m a nag on a lot of things but they know on this one I really mean it.

But I guess the damage was already done. I have to say that, given the battering I let my skin take when I was younger, I’ve thought for years now that I’d be lucky not to get melanoma at some point. Even when the evidence was there, though, I failed to see it. It took a colleague/friend at work, to whom I will be forever grateful. You’d think I’d have learned after the breast cancer. It’s starting to look like I have some sort of death wish. Trust me, I really don’t.

Is this second cancer, though, in some way linked to the fact I had breast cancer? Did the breast cancer itself or the treatment I had somehow enable something that was perhaps already there, simmering away with “malignant intent” (great phrase from a doctor friend), to start growing? I’ve no idea, but the American Cancer Society says that while the most common second cancer in survivors of breast cancer is another breast cancer, they’re at a higher risk for certain other types of cancer, including – wouldn’t you know? – melanoma.

I have no idea how long this brown patch that’s been removed had been there for. I’d have to say years but I have no idea how many. I have no idea whether it’s changed colour, how big it was when it first appeared or by how much it’s grown or over what period. It’s much the same with the patch that was biopsied. I felt such an idiot not being able to answer any of the consultant’s questions with anything remotely approaching certainty. Again, so much for awareness.

As with breast cancer, melanoma survival rates and the risk of it coming back and/or spreading to other parts of your body vary according to the stage of the disease at diagnosis. Like all cancers that can spread, the earlier it’s caught the better. Most patients with a Stage 1 diagnosis don’t have further recurrence of their melanoma once it’s been treated. It still sucks, though. Not only can melanoma come back or spread to other parts of the body, people who’ve had melanoma have an increased risk of developing certain other cancers. I don’t mean to be flippant but, come on, spare me a third.

I’ve to go back to the dermatologist for regular checks for at least the next year. I’ve to be on a constant look-out for melanoma coming back in the same place or appearing elsewhere on my body. If I was careful in the sun before, I’m going to have to be ultracareful from here on in.

The melanoma was removed under local anaesthetic. I’ll have a scar around two inches long across the back of my right calf. I had the procedure on August 29th and I got the results a week later. Thankfully, the melanoma was very thin. It won’t have grown deep enough into the skin to allow the cancerous cells to break away and spread. So there’s no need for any further testing – of the lymph nodes in the groin, for example, which is where it would spread to first. Another positive is that the “mitotic rate” – a measurement of how fast tumour cells are dividing – was zero.

That’s not quite it, though. The aim of a wide local excision is to remove a margin of healthy tissue all around the melanoma along with the melanoma itself.  I’ve been told that while it’s unlikely, I may need a re-excision, in which case the plastic surgeon would go back in and cut some more tissue out. I’m hoping it won’t be too long before I find out one way or another.

I’ve learnt a lot about how to deal with worry and anxiety over the past couple of years, but getting a second cancer diagnosis is no joke. Waiting to find out what stage the melanoma on my leg was and whether that second patch on my chest was also cancerous and would need cutting out wasn’t much fun. My husband says there were lots of periods when I’d go quiet, followed by long exhalations of breath. I think I can be excused that.

When I was diagnosed with breast cancer in July 2015, I was told more or less straight away that I’d need chemotherapy, a mastectomy and radiotherapy. I knew treatment would be gruelling and would last seven or eight months. With this, if I don’t need a re-excision, I’ll have been diagnosed in the morning and treated in the afternoon. If I’m lucky, that’ll be it… physically at least, emotionally it’s not quite that simple.

I thought long and hard over whether to go public on this. I decided to do so in the name of raising awareness (that old chestnut). Check yourselves, people – there’s an easy ABCD guide: A (asymmetry), B (border), C (colour) and D (diameter) – and take precautions to reduce your chances of developing melanoma in the first place. According to Cancer Research UK, melanoma is preventable in around 86% of cases. For breast cancer, it’s 27%.

To give the wound on my leg the best chance of healing well, I’d to sit with my foot raised in the three days following the procedure and I’ve to avoid strenuous exercise for four weeks (or more, depending on how the healing goes). So no sport at least until the end of September. For those of you who know me, you’ll know what torture that is. I’ve had to cancel four tennis matches that were already in the diary, one of which in particular I was really looking forward to playing. The day before I was diagnosed, I went for an hour-and-a-quarter run. The day before that, I did a 30-mile bike ride.

I’m gutted at not being able to do the 5k Parkrun I do almost every Saturday at 9am on the local common. So much for having set myself the target of beating my personal best time by the end of September. I guess it’ll have to be October or November now, or perhaps even December.

Because instead of focusing on the – frankly-terrifying-if-you-think-about-it-too-hard – notion of two cancer diagnoses in just over two years, you’ve got to, as the old song goes, pick yourself up, dust yourself off, and start all over again. It’s easier said than done, but I’ll give it a good try.

Job done. Cycling for seven hours and smashing my fundraising target

The big day has come and gone. On Sunday July 30th, I completed the mass participation 100-mile bike ride through London and Surrey that I’d signed up for in February, raising in the process almost £2,600 for the breast cancer charity, Breast Cancer Now.

Job done, then. For my efforts, I get a very nice medal and the satisfaction of knowing that I’ve raised for Breast Cancer Now an amazing 399% of my initial target of £650 – a grand total of £2,595. I’m delighted to have raised so much and I’m feeling humbled and a little overwhelmed by the support – financial and emotional – I’ve had from friends, family, colleagues, etc, and also in some cases from people I’ve never even met.

The ride took place 17 months after I finished treatment – chemo, mastectomy with immediate reconstruction and radiotherapy – for the breast cancer that I was diagnosed with in July 2015. My friend Juliette and I rode together and crossed the finish line on The Mall in front of Buckingham Palace just over seven-and-a-half hours after we’d set off from the Olympic Park in east London. Excluding snack and loo stops, we completed the ride in six hours and 56 minutes, just within the seven-hour target we’d set ourselves. Was it hard? Well, it could have been a lot harder. We’d done a lot of training and it clearly paid off. Also, we rode at a steady pace rather than raced. Did I enjoy it? I loved it. I swear I had a smile on my face for much of the ride.

The event was the Prudential Ride London Surrey 100. There were some 23,000 cyclists doing either the full 100 miles or a shorter 46-mile route. The atmosphere among the riders was incredible. I was interviewed by Breast Cancer Now an hour or so after finishing for a video the charity was putting together. I was still on a high, but the questions they asked brought me right back down to earth and made me focus on the main reason I was doing the ride. It wasn’t just about getting fit and it wasn’t just about wanting to feel good about myself. It was about raising money that will help fund research into a disease that kills around 11,500 women and a few dozen men in the UK alone every year and about raising awareness around secondary breast cancer. I feel honoured to feature in the resulting video. You can see it here on YouTube.

Juliette and I couldn’t have done the ride any faster and still have been comfortable. There had been heavy rain much of the previous day and overnight but the weather on the day was perfect. We felt good all the way round, heeding the advice we’d been given to snack and drink at regular intervals. The hills in the Surrey section of the ride were tough but I’d been up two out of the three in training so knew I could do them. The challenge was negotiating them at the same time as hundreds of other cyclists – some walking, some going slightly more slowly than you, some slightly faster and others whizzing by as if nobody had told them they were on a hill!

There were some very obvious highlights:

  • Seeing friends (a huge shout-out here to Sarah and Adele!) and family along the route. I hadn’t anticipated just what a thrill that would be.
  • The cheering from the Breast Cancer Now stand on the way out and on the way back through Kingston. It was loud and uplifting and we could hear the shouts long after we’d passed the stand!
  • The support from the public along the route. The Breast Cancer Now cycling jersey is very distinctive with large white dots on a pink background and people would single you out and call out in support.
  • The camaraderie among the more than 200 cyclists riding for Breast Cancer Now. If you passed or were passed by people wearing the team jersey, you’d have a quick word or at least exchange an empathetic smile or nod. Every time it happened, I’d wonder what their story was.
  • Making it up all the hills.
  • Passing the 74-mile mark, as that was the furthest I’d ever cycled in one go until that point.
  • The pace picking up with 30 miles to go, when the last Surrey hill was behind you and you realised you had plenty of energy left and you were – relatively speaking! – on the home straight. There was just one hill after that, and, at 91 miles in, it was a bit of a toughie.
  • With under 10 miles to go, stopping for a photo outside the centre in Wimbledon where I had the chemotherapy and radiotherapy parts of my treatment. I just couldn’t resist. It felt good.

It was great to meet up with Juliette’s husband, Tim, at the finish line. Best of all, though, was hearing and then seeing my husband Andy and younger son Finlay at mile 97 (my older son Jamie was working and couldn’t make it). I’d expected them to be at the finish line and it was fantastic to see them here. The photo they took says it all.

Everything came together at the right time. I had plenty of willing volunteers to train with in addition to Juliette (Sharon, Jane, Elisabeth and Caroline deserve name checks in this regard). Special mention has to go the Balham Cycling Club, a local cycling club that was originally set up in 1897 and was reformed shortly before I started training. The club rides I went on really helped build up my confidence… and fitness! There was yet another helpful coincidence. Some good cycling friends who live close to the Olympic Park where the ride started invited us to stay with them the night before the event. Not only did they cook a delicious, carbohydrate-loaded meal for us that evening, they made breakfast for us on the morning of the ride and even escorted us to the Olympic Park in plenty of time for our 7.44am start. Thanks for that, Jane and Matt.

Some people tell me I’m amazing. It’s flattering and I know what they mean, but I’m really not. I’m doing what I need to do to produce something positive from the very negative experience that is breast cancer. It’s gratifying to have raised so much money for Breast Cancer Now. On a personal level, this has been an important part of my recovery. Doing the ride has brought some sort of closure. Two years on from my diagnosis, I no longer feel I have anything to prove.

We went on holiday the day after the bike ride. While we were away, I finished a beautiful book I’d been reading called Days Without End by an Irish writer, Sebastian Barry. The title refers to that period in your life when “time was not something we… thought of as an item that possessed an ending, but something that would go on forever”. A traumatic event such as a cancer diagnosis doesn’t half bring it home to you that time does indeed have an ending.

At one point the protagonist in the novel reflects on “things that give you heart” and says “better note them in your head when you find them and not forget”. The support that people gave me in the run-up to the ride most definitely falls into that category. Elsewhere, the same character says that “Man’s memory might have only a hundred days in it and he has lived thousands”. For me, I’m pretty certain the day of the ride will be one of my hundred.

To those who’ve already sponsored me, I’d like to say another huge thank you. Your donation will help Breast Cancer Now move towards achieving its objective that by 2050, no-one will die of breast cancer. If you’d like to make a donation but haven’t yet done so, it’s not too late. You’ll find my fundraising page here: http://www.justgiving.com/maureen-kenny.

There’s a fuss about the chemo I had, so why aren’t I more worried?

There’s a big fuss around the chemotherapy regime I had as part of my breast cancer treatment almost two years ago.

Some early-stage research has suggested that while the chemo drugs I had – given before surgery, as they were in my case – shrink breast tumours in the short term, they could in some cases make it easier for cancer cells to spread to other parts of the body. The implication is that the very drugs that are meant to kill off any cancer cells that have already spread from the original tumour by the time you start chemo may actually make it easier for cancer cells to migrate in the first place.

Now isn’t that just bloody brilliant? The thing is, though, I just can’t bring myself to be too worried about it. It could be years before we find out for sure. Even if I wanted to, I can’t change the treatment I had and, for the moment at least, there’s no suggestion that getting chemo before surgery (pre-operative or neoadjuvant chemo) has worse outcomes than having after (post-op or adjuvant) chemo.

Cancer recurrence is a sensitive topic. Many people – myself very much included as you’ll know if you follow this blog – who have been successfully treated for primary breast cancer feel they’ll never escape the fear their cancer will one day return. They worry that cancer cells from their original tumour have spread and are “hibernating” in their spine, say, or their lungs, where they will one day wake up and form a new tumour or tumours. This is known as secondary or metastatic breast cancer. It’s a valid fear, as well over 11,000 women, and also some men, die of this every year in the UK alone (Recurrence 1). It can’t currently be cured. If you follow my blog, you’ll know I’m passionate about raising awareness around this issue.

Anything that suggests that treatment for primary cancer could in fact cause the original cancer to spread will always cause concern. It’s therefore not surprising that this study – or rather some of the reporting around it – has made a lot of women very worried. I’m at high risk of developing secondary breast cancer (Recurrence 2) but, in common with many women, my fear of recurrence has lessened with time. I’m very glad the findings didn’t come out while I was undergoing chemo in the latter half of 2015. It was such a tense time and this would only have heightened my anxiety. If it had happened this time last year even, I’m pretty sure I’d have been beside myself with worry.

The researchers who carried out this latest study are reported as saying: “Our finding that chemotherapy, when given in the setting of clinically active disease, may promote cancer cell dissemination, is of major concern.” Another article about the study quotes an oncologist as saying: “I am willing to keep my mind open to the possibility that there are some breast cancer patients in whom things get worse” with pre-op chemo. No wonder people are worried.

There’s a need to keep things in perspective, though. There’s no suggestion that having chemo before surgery is less beneficial than having it after. The authors themselves are careful to say that “large clinical trials indicate that the long-term outcome in patients treated in adjuvant post-operative compared to neoadjuvant pre-operative chemotherapy is comparable”. It took a bit of digging to find this out, but it seems the researchers have developed a test that claims to be able to predict when the reaction they describe is likely to occur and they’re looking at whether a particular drug might treat it when it does or even prevent it from happening.

I’m doing a 100-mile charity bike ride at the end of this month to raise funds for the breast cancer research charity, Breast Cancer Now. Breast Cancer Now said of the study on Twitter: “This is very early-stage research and we don’t yet have enough evidence to confirm whether any type of chemotherapy may spread cancer.”

Most women with breast cancer who have chemo have it after surgery. When my oncologist suggested I do it the other way round, I wanted to know why (Understanding your chemo regime). I was told among other things that the evidence was not yet there, but the expectation was that this neoadjuvant approach ultimately would be shown to improve long-term survival rates. I’m hoping that still turns out to be the case. It might not, though.

After finishing treatment in February 2016, I had many anxiety-filled days, nights, weeks and months when worrying about recurrence was the backdrop to my existence. I’m in a different, more accepting place now. I’ve written extensively before about how the fear of recurrence never goes away (most recently here and here) but that you can and do move on (as long as it doesn’t come back, obviously). I think this shows that, for the time being at least, I’ve done all the big, all-encompassing, energy-sapping worrying I can do on this.

Time passing is not the only factor. There’s also an element of fatalism at play. I can’t change the treatment I had. All I can do is enjoy life, live healthily, pay it forward. I don’t mean to sound blasé. I have an intense interest in all new research concerning breast cancer recurrence. Estimates suggest that as many as one in three women who are successfully treated for primary breast cancer go on to develop incurable secondary or metastatic breast cancer. I still find that shocking. We need to know what causes cells to spread and form new tumours if we are to find ways of stopping it from happening.  Incidentally, cancer cells that have spread may never turn into tumours, another point that should be borne in mind with regard to this latest research.

What this shows is that medicine is constantly evolving. There have been huge advances in the diagnosis and treatment of breast cancer in the past couple of decades as there will undoubtedly be in the next two. Along the road, we may discover things we don’t like, possibly relating to our own treatment. That’s how progress works. We can only hope we’re getting the best there is at the time.

Breast Cancer Now’s aim is that by 2050 no-one will die of breast cancer. My training for the 100-mile charity bike ride through London and Surrey on July 30th is going well. I’ve been overwhelmed by the generosity and support of those who’ve already sponsored me. If you’re one of them, I’d like to say a huge thank you. If you’d like to join them and in so doing help support the research Breast Cancer Now is funding, please don’t hold back. You can read my story and sponsor me here: https://www.justgiving.com/fundraising/maureen-kenny.

 

 

 

 

 

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.