A good news update

Now this is the kind of update I like to post. Yesterday’s re-excision went really well; they managed to close the new wound on my right calf directly so I got away without having to have a skin graft. Now that is what I call a result.

This second procedure involved as a precautionary measure cutting out a chunk of healthy skin and tissue from around the site of the original, very early-stage melanoma that I had removed at the end of August (Melanoma? You’ve got to be kidding). The margin of healthy tissue around the cancer that we got first time round fell short of that recommended in the treatment guidelines for melanoma and so a second re-excision was needed. A skin graft had been on the cards since I was told in early September that I might need a re-excision. It was later confirmed this would be the case (Bish, bash, bosh? No such luck). However, I got an email just last week saying the plastic surgeon would in fact try and close the wound directly and would only do a skin graft if that didn’t work.

I knew there were no guarantees. Having heard that, however, it was impossible not to get my hopes up. I was marked up before surgery to have the donor skin taken from my outer right thigh in case a graft were needed (the photo on the left shows the arrow pointing to the donor site) and it was pretty weird going under the anaesthetic not knowing what the outcome would be. I’m delighted to say the non-graft option worked. Twenty-four hours later, I’m sitting here at home on the sofa with my leg up feeling very relieved and happy.

I was told the good news as soon as I came to after the op; I don’t know whether I’d already started moving my hand down to feel my right thigh to find out for myself or whether I did that as I heard! You’re a bit groggy when you first wake up but I’m pretty sure the person who told me said the wound “closed beautifully” – although later, as he was warning me that I had to take it really easy for a while to give the wound a good chance of healing well, the plastic surgeon said it was “tight”. I’m taking no chances. Rest has been ordered and rest is what I’ll do. I see the surgeon in a week’s time and he’ll check the wound. In the meantime, I’ve to keep the dressing dry, so no showers but I can have a bath with my leg hanging over the side. I can do that.

So, I’ve been spared a skin graft. It doesn’t sound much and I know a great many people have far more serious things in their own lives to worry about. But it’s like a weight’s been lifted from me. I feel like I’ve been given a bit of a break after what’s been a stressful few months – which included, mind you, the very welcome distraction of a fortnight’s holiday in Cambodia. It sounds ungrateful but if I’m honest, with this hanging over me, I was ambivalent about going right up until I left. It was, of course, amazing. A massive thanks to Peter, my brother, for the company and for sharing the adventure.

I know that if there are problems with healing, we may still have to go down the skin graft route, but this is a good position to be in. I’m trying – not very successfully, it has to be said – not to look too far ahead, but here’s to a speedy and successful recovery.

A funny thing happened in the hospital. There I was, lying on the bed in my 1st-floor room before surgery, when I heard some strange noises outside, seemingly very close.  I turned my head… to find a window cleaner hard at work! We had a nice little chat through the glass. He said how cold it was; I asked if I could take his photo as this was one of the most amusing things that had happened to me. His unexpected visit certainly took some of the pre-surgery tension away.

Another thing, the anti-DVT stockings you have to wear after surgery were white when I was last here. They’re green now but they’re as unflattering as ever. It seems longer but it’s only two years since I had major breast cancer surgery at this same hospital. I had to sport the white stockings for quite some time afterwards (The least sexy washing line ever). Now I wasn’t planning on ending this upbeat post on a morose note but I have to say I really hope I never get to find out if those stockings change colour again.

On with the healing.

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.

Things are moving… finally

Things are finally moving again, which is good. I was right. My case had got stuck in the system. I chased it up and kept asking for answers until I got them.

My case will now be assessed on October 26th for a second opinion on whether a re-excision is needed on my right calf where a very early-stage melanoma was removed at the end of August. That’s nearly six weeks after I was told a second opinion would be sought. I know there’s no rush and my case is borderline, but that is quite a long time. I’ve been assured “it’s not usually like this”.

The issue is that while the melanoma was removed, they got slightly less healthy tissue from the area surrounding the melanoma than the guidelines recommend (Things are rarely straightforward). I’ve been told again that a re-excision – a narrow one – is probably what will be recommended so they do in fact get the full 1cm clear margin that the guidelines say we should have. It’s precautionary, but better safe than sorry. I’m happy with that. I’ll meet with the plastic surgeon to discuss the results and next steps on November 1st. As I said, there’s no rush. If a re-excision is indeed what we decide on, it can wait until after I get back from the two-week trip to Cambodia that I’m going on with one of my brothers on November 2nd. Yes, yes, it’s a complete self-indulgence but if there’s one thing I’ve learned from the whole breast cancer experience, it’s that life is for living.  If you can, then why not.

The leg wound is now well on the mend and I’m exercising again. I did my local 5k Parkrun last Saturday – my slowest time in well over a year after seven weeks of enforced inactivity – and I’ve been back on the tennis courts. I have four tennis matches planned over the next seven days. I’m clearly making up for lost time.

I’ve been thinking about how I’m feeling about this whole melanoma thing. It’s strange. I was pretty shell shocked initially (Melanoma? You’ve got to be kidding), as you’d expect. Now I’ve got my head round it, I’m at the stage where I see it as more of an annoyance than anything else. Friends who are only finding out about it now are more upset and outraged than I am. I know if this were a first cancer diagnosis I’d be freaking out and I know too that melanoma’s known as the nasty skin cancer because it can spread very quickly. But I really do feel I’ve got off lightly. Cut it out and hopefully that’s it. A possible re-excision? That’s ok too, although a skin graft would not be great if that’s what’s needed – I’m hoping it won’t be.

Perhaps I’m being naive. Or perhaps it’s sheer relief that it was caught so early. That’s not to say I’ll be able to just brush it off. I’m already looking at a couple of freckles/moles/brown spots – call them what you want – and wondering how long they’ve been there or whether they’ve always been that size. But I just cannot “do” worry the way I did with breast cancer. I know how destructive it is; I can’t do that again.

Let’s see what November 1st brings. Re-excision or not, skin graft or not, I’ll be taking my running shoes to Cambodia.

Things are rarely straightforward. Still waiting.

It’s been over a month since we got the histology results for the melanoma I had removed from my right calf at the end of August and I still don’t know for certain whether I’ll need a second procedure.

There’s no doubt that “we” (for want of a better term) got all the melanoma. “Completely excised,” reads the report from September 4th (I was told on September 5th). However, we didn’t get quite as much healthy tissue from the surrounding area as the guidelines recommend. That said, because the melanoma was so thin, and also it seems it’s not an exact science, it could be that what we did get might be considered enough.

Because it’s not clear cut (no pun intended), the doctor(s) involved in the initial diagnosis and procedure asked for a second opinion. I am, of course, more than happy with that but the second opinion – or rather the official second opinion – hasn’t been forthcoming. While the plastic surgeon has been told they will recommend a re-excision, we’re waiting for official word before we make any decisions. That also makes sense but we’re still waiting. And it’s not clear to me why that’s the case.

I had a wide local excision on August 29th (Melanoma? You’ve got to be kidding).  The surgeon cut out what turned out to be a very thin melanoma along with a “safety margin” of healthy-looking tissue around the lesion. The purpose of the safety margin is to remove both the primary tumour and any melanoma cells that might have spread into the surrounding skin. The recommended margins, both at the edges and in the depth, vary depending on the thickness of the tumour. Thicker tumours need larger margins. The definition of thin is a thickness of less than or equal to 0.5mm; in my case it was 0.3mm. Very thin by any normal measure and thankfully in melanoma terms too. I couldn’t be more relieved at that result, but it turns out there’s a question over the margins. Thus the need for the second opinion.

Things are rarely straightforward.

Also, the wound has taken longer to heal than it could have done so I still haven’t been able to get back to exercising. Your calf is not a good place to have a wound as basically you’re putting stress on it with every step. We’re nearly there, though… although if another excision is needed we’ll be back at square one.

The main thing is that the melanoma was thin. I understand a second procedure, if that’s what’s decided, would be a precautionary measure – albeit with potentially considerable consequences on a practical level if it involves a skin graft, as I’ve been told it may well. I also understand that you have to wait until the original wound is “safe” before you re-excise. However, regardless of when we’d do it, I’d really like to know for sure whether it’s happening or not.

 

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). However, in common with many women who’ve been through treatment for primary cancer and are fortunate enough to be living with “no evidence of disease”, I’ve somehow learned to deal with that fear of recurrence so that it’s no longer almost the only thing I think about. 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. At this stage, 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.

You’re living life with a new intensity and you’re feeling good. You’re in a running club and on top of that you’ve joined a cycling club. You’re doing 10-mile runs (this coming Sunday, run number above) and 74-mile bike rides (last Sunday). You’re playing lots of tennis. You’re enjoying work. You’re “giving something back” by doing some volunteering with a couple of charities.

You’re hugely appreciative you have the means and the time to do all these lovely things. It’s all great fun but you’re not fooling yourself. You know that, having had breast cancer, the reason you’re so active is that your drivers are different from most people’s. You’re acutely aware of the fragility of life and of how quickly things can change and you know that you’ll never again take your health or your time here for granted.

It’s nearly two years since you were diagnosed with Stage 3a breast cancer. Your treatment went really well. You’re tolerating well the daily hormone therapy you’re taking to reduce the risk of your cancer coming back. You’ve got nothing to report to the consultant breast surgeon when you see him for your latest six-month check-up a couple of days before you fly to New York.

The thing is, once you’ve had breast cancer, it’s never really over. Just ask Olivia Newton-John, or rather Sandy from Grease, who announced a few days ago that the primary breast cancer she was successfully treated for 25 years ago – yes, you read that right, a whole quarter of a century ago – has come back in her spine. That pain in her lower back that she thought was sciatica was in fact metastatic or secondary breast cancer. And secondary breast cancer, while treatable, is currently incurable. Not that you’d know that from most of the reporting of the Newton-John news.

Everyone who’s had a cancer that can return deals with it differently. My way, for the moment at least, is not to leave for tomorrow what you can do today. I know too well that what’s just happened to Newton-John could happen to me at any time – tomorrow, next year, in five years or indeed in 25 (although I have to say if I’m still here and it comes back in 25 years’ time – at which point I’d be 78 – I reckon I’ll have done well).

Even if I hadn’t had breast cancer, the news about Newton-John’s recurrence would have been upsetting. As Rosie Millard writes in a brilliant article in The Independent newspaper, “the news that the Grease star’s cancer  has returned grips women of a certain age who grew up looking to her as something of a lodestar of our own happiness and maturation”. I saw Grease for the first time as a teenager in the summer of 1978 in Vancouver, where I spent the whole of the school holidays – courtesy of my great uncle who lived there – enjoying a freedom I’d never had before. The film hadn’t come out yet in Britain and so for a few months back home in Glasgow I had rare bragging rights among my friends!

Sandy’s transformation from good girl to bad scandalised and thrilled in equal measure us 14- and 15-year old Catholic schoolgirls. My mum didn’t approve of the film. I remember her telling me that she’d heard there was “a not very nice scene in the back of a car”! I bought the album. I’ve still got it. I know almost every word to every song. I feel I’ve been singing along to the soundtrack for much of my life. I even dragged my husband and some friends – some were willing and some were not so willing – along to the sing-along version as part of my 50th birthday celebrations a few years back.  And yes, we dressed up!

If you follow this blog, you’ll know I’m doing a 100-mile bike ride in July to raise money for a breast cancer research charity. One of the fundraising events I was planning to organise involved a showing of Grease. I’m not sure I’ll do that now. Instead of being a bit of a laugh, it would just be sad.

The fact that breast cancer can come back and kill is the reason I’m raising funds for Breast Cancer Now. One of the charity’s goals is that by 2050 no-one will die of breast cancer. I’m doing the Prudential London-Surrey 100, on Sunday 30th July. It’s a mass cycling event that starts at the Olympic Park in east London, goes out through the Surrey hills and finishes back in central London in front of Buckingham Palace. If you’d like to sponsor me, you can do so here: https://www.justgiving.com/fundraising/maureen-kenny.

My training’s going well and I’m really enjoying it. I’ll carry on living for the moment and as I’m struggling up a hill on my next practice ride I’ll spare a special thought for Sandy Olsson – or rather, Olivia Newton-John – as she gets on with this next challenging phase.

And time goes by

I thought I’d more or less passed all my post breast cancer diagnosis- and treatment-related milestones. But then a few days ago I found myself having to put on a visor halfway through a game of tennis. It was a beautiful sunny morning but it wasn’t because of the sun. It was to stop my hair getting in my eyes.

I hadn’t had to do that since starting chemo in summer 2015. Don’t ask me how I managed it, but I kept playing tennis more or less all the way through chemo (Tennis II). I had eight sessions over 16 weeks. I lost my hair (Learning to live with a wig). I played with a wig on but of course it never grew so my fringe never got in the way.

I finished chemo at the end of November 2015. My hair started to grow back and I stopped wearing my wig just three months later, towards the end of February 2016 (In the end, the wig ditched me). It was very, very short at the time. Now, 16 months on from my last chemo session, I’ve lost count of the number of times I’ve had it cut. Given my experience on the court yesterday, it needs cutting again!

Summer 2015, though? That’s almost two years ago. I finished all the “big” treatments for my breast cancer  – chemo, mastectomy, radiotherapy – over 14 months ago and I still have thoughts every day about whether my cancer will come back. I find it hard to believe that anyone who’s had any kind of cancer that can come back doesn’t. If they exist, I want to know their secret.

But it’s ok. Thinking about something it is not the same as worrying about it. I don’t think you can stop a thought coming into your head. You can, however, decide what to do with that thought. You can dwell on it and let it worry you or you can acknowledge it, process it and send it packing if it’s not helpful. I now regularly do the latter, but it’s taken me a long time to get to this position of strength.

Time does indeed go on. I look back over the half dozen posts I wrote about recurrence last year in the months after my hospital-based treatment ended. I was clearly terrified and was convinced it was only a matter of time before my cancer came back and finished me off. That might still happen, of course. Indeed if I’m being completely honest, I have to admit that I still do expect it to come back at some point. But while I do still think about, I don’t worry about it, at least not in the almost all-consuming, anxiety-filled way I did then.

It’s still hard sometimes. You’ll have been fine for ages then there’ll be a “trigger” of some sort and you’ll be blindsided by a dark thought or a wave of melancholy that seemingly came from nowhere. When that happens, you have to just go with it and remind yourself that it’ll pass and that what you went through was really traumatic so it’s fine still to have big thoughts about it all.

With every little ache or pain I get, my first thought is still that it’s a late side-effect of the various treatments I had, a side-effect of ongoing treatment… or that my cancer’s come back and spread to wherever the pain happens to be. But while you can’t time or measure thoughts, I’m pretty sure these particular ones don’t last longer than a millisecond. If an ache or pain persists, well that’s a different matter; you have to get it checked. When someone suggests booking something for any length of time in advance, my first thought is still whether I’ll continue to be “cancer free” by then. That’s a big improvement on a year ago, though, when my first thought was not whether it would have come back by the time whatever we were planning came round but that it would almost certainly have come back by then. These days, as with the aches and pains, I force myself very quickly to move on and to focus instead on looking forward to whatever it is I’ve just booked. Life is good.

If my cancer comes back, it comes back. John Hurt, the great British actor who died of pancreatic cancer earlier this year, said: “We’re all just passing time, and occupy our chair very briefly.” We might as well make the most of it while we’re here. So here’s to life and to hair getting in our eyes.

This post is dedicated to the lovely Julie, my friend and tennis opponent from the other day who asked me how I was and in doing so inspired this post.

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

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

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

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

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

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

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

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

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

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

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

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