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 – a horrible mix of numbness and pins and needles – 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 and that gets worse 1) when I’m running and 2) when it’s cold.

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

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 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. That’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 at 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.

Bish, bash, bosh? No such luck

It’s finally been decided. On November 28th, I’m to have a second round of surgery on my right calf where I had a melanoma – thankfully very early stage – removed a couple of months ago.

This second procedure will involve cutting out a chunk of healthy skin and tissue from around the site of the original melanoma and, unfortunately, a skin graft and being left with a shark bite-like scar on my leg. Nice.

So much for hoping I’d get away with essentially being diagnosed and treated on the same day (see previous posts). Bish, bash, bosh? Wishful thinking indeed on my part.

The melanoma was completely removed in the original excision. That’s the main thing. However, they didn’t quite get the full 1cm of healthy tissue around the cancer – “the clear margin” – that the treatment guidelines recommend. In case there are skin cancer cells lurking there that are too small to be seen by a microscope, they take a margin of – seemingly – healthy tissue to reduce as much as possible the risk of the melanoma coming back or spreading. Having been treated previously for breast cancer, I know how much that matters.

I’ll have the surgery under general anaesthetic, as an outpatient.

As for the skin graft, well this time round there won’t be enough skin to pull together and close with stitches. The plastic surgeon will take a layer of skin from my inner thigh with a device that looks a bit like a very sharp potato peeler, place the donor skin over the new wound, stitch it in place then bandage it all up. Apparently after the op the donor site can hurt more than the skin graft site.

I’ve to “take it very easy” for the first few weeks after the procedure to give the graft the best chance of “taking”. You don’t even want to think about what happens if it fails.

The bandages are removed a week later and the stitches a week after that.

So, two or three weeks of as much rest as possible and my leg raised while resting, followed by three months (at least I think that’s what the surgeon said) of wearing a compression stocking on the affected leg.

That means yet another extended period of enforced lack of exercise. You’d think I’d be getting used to it by now, but I’m really not. I’m shelving any plans I had to better my current personal best in the 5k Parkrun I’d got used to doing every Saturday morning in my local park. When the time comes, I’ll just be grateful to be running again. Tennis and cycling will also be off the radar for a good while. At this rate, I’ll consider myself lucky if I get to go skiing on the skiing holiday I’ve booked at the end of January.

I know I’ve really got no choice, but it does all seem rather drastic for something that I keep being told is “purely precautionary” and over which there’s apparently no rush to do.

That said, I know from previous experience that you don’t mess with cancer. I’m not going to be the one who says “let’s not bother and just hope for the best”.

I know the key things by far are that the melanoma was very early stage (1a) and that it was completely excised first time round. Even so, I think I’m entitled to a bit of a moan.

The week before I have this second procedure, I have my three-month follow-up with the consultant dermatologist who diagnosed me initially. Also, I’ll have to postpone by at least a week the annual mammogram and ultrasound that I have because of my earlier breast cancer. The appointment’s been in the diary for early December for six months now. I’ll still be resting at that time and trying to keep any walking to an absolute minimum.

It all feels too weird. Never in my wildest dreams did I think I’d be postponing follow-up tests relating to one cancer because I was having treatment relating to another.

Friends aiming to sympathise say it doesn’t seem fair. We all know life doesn’t work like that. But you know what? I tend to agree with them. I’ve a lot to be grateful for – not least the fact I’m writing this while on an incredible two-week holiday in Cambodia – but, as I’ve said before, you don’t always have to be grateful it’s not worse.

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.