Lucky or unlucky? It depends how you look at it

Understandably, a lot of people get upset when you tell them you’ve been diagnosed with secondary breast cancer. My boss was one of the first people I told, back in April or May. We chatted and she said, among other things, that I’d been so unlucky.

She and I both know how serious any type of secondary cancer is. If you’ve been diagnosed early enough, it will be treatable and can be controlled – in some cases for many years – but ultimately it’s incurable. What treatment does is buy you time. 

Instinctively I agreed with my boss. To find out at the age of 55 that your likely prognosis is in years not decades felt pretty unlucky to me.

Almost immediately, though, it occurred to me that that wasn’t actually the case. In fact, I said to her while trying to hold back tears, I’ve been incredibly lucky.

What do I mean by that?

Well, there have been some very sad and difficult times but, broadly speaking, I have not had a hard life.

I have an amazing partner I’ve essentially been with since I was 21. We’ve had and are continuing to have lots of good times together.

I have two lovely, healthy and seemingly happy young-adult children. 

Mum, my brothers and me

I had a happy childhood with loving parents and five great brothers. My dad died just a few years ago but my mum is alive and kicking and clearly loves me to bits. My brothers and I are all still very close. The photo here is from when I was up in Glasgow this summer.

I have two aunts – my dad’s two sisters – out in the US, one of whom is also my godmother. I’m very close to both despite the distance between us. I went out to visit them this past summer, thus the photo below. One of my brothers was there too, from Scotland, and while I know the term “joy-filled” sounds schmaltzy and cliched, I can’t think of a better way to describe the few days we were all together.

My husband’s parents, my in-laws, thought the world of me. We were lucky to have them in our lives for as long as we did.

Outside of the family, I have a godson and goddaughter I’m incredibly fond of. I got to see both of them this summer.

My lovely aunts and me

I have numerous wonderful friends and lots of different friendship and acquaintanceship groups.

We’re financially secure and I have great colleagues and a job I love.

I’ve been able to travel extensively, both on a personal and professional level.

I’ve been responding well to treatment; there was no guarantee I would. 

Physically, most of the time, I really don’t feel like there’s anything wrong with me over and above the standard things any 56-year-old female might expect to have. I’m cycling, running and playing tennis.

Other treatment options will be available once the specific treatment that I’m on stops working. I hope it’ll be a long time before that happens but I’m aware it could happen sooner rather than later.

So have I been lucky or unlucky? Maybe it’s not a question of one or the other. We’ve had our share of troubles and no-one would ever choose to have what I have. Regardless of how well I feel physically at the moment, living with an incurable disease is really tough emotionally. Among other things it’s hard not to feel guilty for bringing this upset into everyone’s lives. 

Healthwise, I can but hope for the best and take the coming months and hopefully years as they come. In the meantime, I’ll try to stay calm and be easy on myself, and keep appreciating and making the most of this life – lucky or unlucky – that I have.

Cycling plans come crashing down

This really was going to be the year of the bike. I’d even bought an additional week’s leave from work so I could fit in all the cycling trips, events and related training that I had planned.

The secondary breast cancer diagnosis I received at the end of April, though, put paid to that. The primary breast cancer I was treated for in 2015/16 has come back and has spread to my bones – most significantly to my spine  – and bone marrow. It’s treatable but not curable.

I know the diagnosis is the key thing here. Everything else, really, is insignificant. However, when I got my diagnosis, I just felt all the ambitious and exciting cycling plans I had for the summer collapse around me. To make matters worse, I had my good bike stolen from outside the hospital where I had the appointment with the consultant on the very day she told me she strongly suspected my cancer had come back. It really felt like someone had it in for me.

Most significantly, I’ve had to pull out of the big charity bike ride I was planning on doing in France in July that consisted of cycling Stages 5-7 of the Tour de France route a week before the real thing. I was due to cycle 345 miles over three consecutive days as part of a big fundraising event known as Le Loop. Instead, I’ll be following the other riders’ progress from my home in south London. The other riders are doing anything from two to all 21 stages of the Tour.

I’m a member of two cycling clubs, one of which is BellaVelo, a fabulous women’s cycling club and community based in south west London. A bunch of us from BellaVelo had signed up to do various stages of Le Loop. It was all very exciting. There was such a buzz around it. Almost every conversation I had with relatives, friends and colleagues involved someone asking how my training was going or asking for details about the event itself. I’m gutted not to be doing it.

I’ve also had to withdraw from the “Highland 500”, a version of the famous North Coast 500 bike ride that I was planning to do with my brother Peter the first week in June. This was to have been a major piece of the training for Le Loop. For seven days in a row, I should have been struggling up and racing down one hill after another in the Scottish Highlands. Instead I was at home in Balham getting to grips with the treatment I’d just started and with the symptoms of the cancer itself. 

Among other things, I have anaemia as a result of the cancer being in my bone marrow – it can also be side effect of the treatment I’m on, so that probably hasn’t helped – and I’ve suffered a massive loss of energy. I bought a good second-hand bike to replace the one I had stolen; at the moment even looking at it makes me tired. In fact, the anaemia is at the stage where the consultant oncologist is proposing a blood transfusion.

My fundraising for Le Loop had been going really well. I was already well over my target of £1,200 when I got the news that my cancer had come back and realised there was no way I would be doing this event.

The training was also going well. I was walking or running up the stairs on the London underground. I was doing indoor cycling sessions aimed at improving my pedalling technique, my endurance and my hill-climbing abilities. Quite frankly I’m not sure how much progress I was making on that last front but I was at least trying! I even rode up and down Box Hill in Surrey five times in a row one day.

I had also been on a cycling training camp in Mallorca with BellaVelo in March. That trip was to kickstart my outdoor training for Le Loop… and that’s where my back and right hip starting hurting. I followed it up when I got back to London and that ended up in a diagnosis of metastatic breast cancer. Sadly I only managed one ride with my other club, the Balham Cycling Club.

All was not totally lost on the cycling front following my diagnosis. We agreed I’d start treatment the week beginning 20 May and this meant I could go ahead with the four-day BellaVelo cycling training camp that I was helping organise in the New Forest from 9 – 12 May. I was slow, as I knew I would be, but it was great fun.

It also meant I could go on a four-day tennis camp in Mallorca with three friends, as planned, from 13 – 17 May. I could have started treatment that week, but I think the consultant felt sorry for me. “Do your tennis,” she said, “before I take away your summer.”

Finally, on 19 May, I did the shorter version of the Etape Caledonia, a beautiful closed-road bike ride that starts and finishes in Pitlochry in Scotland.

I had signed up originally to do the full 85-mile route, again with my brother Peter. I was pretty confident I could do the full distance but I knew I didn’t have the strength to do it in the allotted time. There was no way I was going to suffer the ignominy of being swept up by the “broom wagon”, so I did the shorter, 40-mile route instead.

It was a bit of a logistical challenge to get to Pitlochry but I’m glad I made the effort. It was very special – and not just because I’m Scottish! The real reason, of course, was that I knew I was starting treatment in a few days’ time. I didn’t know (I still don’t) when – or even if – I’d next do another ride like that. Peter rode the first 13 miles with me to where the two routes separated then sped off to complete the full 85 miles.

The final cycling-related casualty this summer of my diagnosis is likely to be Ride London, the 100-mile closed road bike ride through London and the Surrey hills that’s taking place this year on 4 August. I got a place in the public ballot this year. This was to be the third and – I’d already decided – final time I’d do it. It was to be the grand finale to an amazing summer of cycling.

You never know. If I get off lightly on the side-effects front, get an energy boost,  manage to get my head in gear and keep cycling during these first few months of treatment, I may try the shorter, 46-mile version of Ride London. At the moment, I have no idea how feasible that might be. 

The pain in my hip disappeared for a while but it’s back now. Regardless of whether it’s related to the cancer or not, that pain is worse than any pain I have in my spine (where there’s definitely cancer) or in my ribs (where there possibly is).

My cancer will obviously affect my physical ability to do things as it progresses. It’s already doing so and we’re just at the start. Specifically, I fear my days of competitive tennis are over. Just like that. The stress on my back and hip is just too much.

As for running, well I’m not so sure on that front yet. I can’t bring myself even to try at the moment.

There’s obviously a weight-bearing thing going on here. My hip doesn’t hurt at all when I’m on the bike and my back only hurts a little. All the way through my treatment for primary breast cancer and beyondthe bike has always been part of the solution. I’m desperately hoping that continues to be the case.

It’s back

This is the blog post I hoped I’d never write. A lot of people who aren’t yet aware of my situation will be shocked and upset by it. There are so many people I’d like to break the news to on an individual basis but that’s just not possible. Whoever you are, thank you for reading.

It’s back. I’ve been diagnosed with secondary breast cancer. The primary breast cancer for which I was treated “with curative intent” in 2015/2016 has spread and turned up in my bones – most obviously in three vertebrae in my spine* – and bone marrow.

The consultant oncologist who broke the news to me is the same doctor who treated me originally. She knew I knew this very well already but I guess she had no choice but to include it in the conversation; it was “treatable but not curable”.

So here we are, having recently started treatment following a diagnosis of secondary/advanced/metastatic/late stage/Stage IV breast cancer. Call it what you want, they all mean the same thing – a life-limiting illness with a very uncertain prognosis.

I was diagnosed formally on 30 April (though I knew it was coming) and I started treatment on 22 May. I’m on a new combination of powerful and aggressive drugs that are aimed at preventing the cancer from spreading any further for as long as possible. For some women, these drugs are game changers in terms of how long they keep the cancer under control. Like the consultant, we’re hoping they will result in a “durable clinical response” for me. We’re trying to be positive and to focus on the fact that I’m largely well at the moment and we hope treatment will keep me this way for a long time.

The good news is that “bone mets” from breast cancer can often be stabilised and managed for long periods of time, ie for a number of years or more. The fact that it’s also in the bone marrow complicates things. We can but see how it goes. The aim of treatment is to control the cancer, relieve symptoms such as pain, and reduce the risk of fracture – while at the same time trying to maintain a good quality of life for the patient.

It wasn’t inevitable, but anyone who follows this blog will know that I was at high risk of recurrence. Lord knows I wrote about it often enough. While I had in fact made peace with that, there’s very little I wouldn’t give for this not to have happened.

For a long time after finishing treatment for primary breast cancer, I lived in fear of it coming back. I worked very, very hard to get to a position where, while I thought about it often, I really no longer worried about it and just got on with living. Life was good; it was very good. I had conquered my fear and I was in a position of pragmatic acceptance that it might one day return. I’m really proud of myself for having got there. It wasn’t easy.

That mindset of acceptance is really helping me now. It’s a difficult time for us all but life goes on. We’ll aim to keep enjoying it and we’ll keep hoping for the best for as long as we can.

As always, writing helps. I’ve already got a few more posts in the pipeline – about my treatment, how I found out, how I’ve had to cancel big cycling plans I had for this year, etc. You know where to look if you want to read them. Wish me luck.

*As well as being in my bone marrow, the cancer is definitely in vertebrae T8, T9 and L4. There is also a lesion in my left-side rib area as well as “areas of less significant scattered bone disease”. My right hip hurts like hell sometimes but while I’m told there are no obvious signs of cancer there, it could well be related in some way to this new diagnosis – although, equally, it may not.

Three years on in some cases, but thank you

Earlier this year, I wrote that at some point I would write about “all the people who’ve helped and supported me through what I can only call the shit-stormy periods of the past two and three-quarter years”.

That was in March, just after I’d run a half marathon on one of the coldest days of the year. I have nerve damage in my feet – peripheral neuropathy, a side effect from the chemotherapy I had as part of my breast cancer treatment that started three years ago to this very day. Most of the time, I almost don’t notice it. However, it was particularly painful as I was running along the River Thames on that cold day, when London was in the midst of a horrendous cold spell dubbed “the Beast from the East”. To distract myself, I started thinking about all the things I had to be grateful for from when I was in treatment for my breast cancer – and, as if that weren’t bad enough, melanoma too, a couple of years later.

Then one Sunday this summer, in July, 60 miles or so into a fabulous but challenging 70-mile bike ride from Crystal Palace in London to Whitstable on the Kent coast, my right foot was killing me again. It was very, very hot – probably one of the hottest days of the year so far. Extremes of temperature clearly make the peripheral neuropathy worse. Again, some distraction techniques were called for. As I was thinking, I decided I really had to put it all down for the record.

So here goes. The list is not meant to be comprehensive and it’s in no particular order. It’s for all the friends who reached out in whatever way during those times. If you did something and it’s not included, don’t be offended. It was all very much appreciated and your kindness and thoughtfulness made things a lot easier than they might otherwise have been. I will be forever grateful. Thanks, therefore, to so many, including those who:

  • randomly cooked meals and dropped them off, including but very much not limited to when my husband Andy had – at my insistence – taken our sons skiing when I was stuck at home having daily radiotherapy sessions
  • drove or offered to drive me to hospital appointments
  • phoned or texted when they were popping to the shops to ask if I needed anything
  • sent words of encouragement or sympathy by whatever means
  • gave me a box full of “things you might need during chemo”, including hand cream and a hot water bottle
  • took me on a walk up Sugar Loaf Mountain in Wales between chemo sessions and visited between Xmas and New Year, days after I’d had my big op
  • gave me a lovely snuggle blanket because they knew I’d be spending a lot of time on the sofa
  • cycled from north to south London against a strong head wind – it might also have been raining! – to pay a visit after my op
  • kept playing tennis with me throughout chemo
  • sent hand warmers after reading about how cold I was when I was suffering under the cold cap during chemo
  • presented me with a bottle of nail varnish from Liberty to use when my nails (which chemo had trashed) were in better shape
  • issued an invitation to take me out sailing when I was better – and kept following up until it happened
  • appeared out of the woodwork to wish me well after they’d “heard from a friend” or colleague that I was unwell. That takes nerves. Cancer is scary and the easy thing is not to say anything.

On the blog front, a shout-out is due for those who gave feedback on draft posts or who took time to make thoughtful/sympathetic/encouraging/funny comments on actual posts..

And there’s all the stuff involving my beloved Tooting Common, the park at the end of the road. Thanks on that front to the folk who:

  • took me there to pick raspberries after one of my first chemo sessions
  • accompanied me on walks and trips to the cafe during treatment and recovery
  • encouraged me and cheered me on when I started doing the Saturday morning 5k Parkrun there after I’d finished treatment and was trying to get fit again.

And then there’s the Spanish friend who wrote and dedicated a sonnet to me. Yes, really. Now how many people can say they’ve had a sonnet written in their honour? Not bloody many, I’d venture. And there’s the other Spanish friend who wrote me the most beautiful long and heartfelt letters (or rather emails) that I will never tire of reading.

And, of course, there were the cards and the flowers that made the living room look like a flower shop.

Throughout the whole thing and beyond, there has been work, which really could not have been more supportive. Also, I have to mention Breast Cancer Care Worldwide chat on Twitter (#bccww) – a testimony to the positive power of social media.

On the melanoma front – which to be honest I kept relatively quiet about, at least initially – there were the friends who bought me running socks for when I was up and running again or who gave me scar-reducing cream for the scar I now have on my right calf from that particular operation.

This might all seem a bit random but I wanted to get it out there and have it on record. There you have it.

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.