A quick update and it’s rather a mixed bag

Let’s start with the good news. I’ve no idea what its relative importance will be longer term but I’m a glass half full kind of gal and I’m happy to enjoy it for what it is, so here goes.

After just one cycle of chemotherapy, the breast cancer tumour marker that had been rising since last November has gone down by almost a third. 

The behaviour of this CA 15-3 marker is very much only one part of the overall picture. However, the fact that it’s fallen is a clear sign that the chemo treatment that I started just three weeks ago – oral capecitabine – is dampening down at least some of the cancer activity that’s going on inside my body. The level had been rising faster in recent months and while a reduction by a third only takes it down to what it was at the end of March this year, in proportionate terms that’s a big fall. That has to be a good thing. 

If I’m not rejoicing, it’s because that’s only one part of a substantially bigger and more complicated picture. Also during this first cycle of chemo, my haemoglobin count took a huge dive. Instead of picking up my second round of capecitabine tablets on Thursday afternoon so I could start taking them the following day, I spent upwards of four hours in the day treatment unit at the local hospital having a blood transfusion.

My haemoglobin count had been falling for a few months and this was one of a combination of factors that had led to my coming off the treatment I’d been on since my initial diagnosis of advanced/secondary/metastatic breast cancer in spring last year. I had known that if the level were to fall much more, a blood transfusion would probably be in order. That’s precisely what happened.

Coincidentally, it was almost a year ago to the day that I had a transfusion for precisely the same reason. Then, I was really taken aback when the consultant told me what she was advising. I had only recently had the diagnosis confirmed and being told I needed a blood transfusion really brought home to me the seriousness of what was happening. This time round it couldn’t have been more different. It wasn’t quite “hey, ho, let’s go“, but there was no drama, just an appreciation of the effort that’s going into keeping me as well as possible and a ready acceptance on my part that developments such as these are now part of my reality. 

There are two aspects to my disease. The cancer is in my bones, weakening them as it tries to spread further. It has also infiltrated my bone marrow, reducing my body’s ability to make healthy blood. Both aspects need to be managed, along with the side effects of the drugs. That’s what I mean about the fall in the tumour marker only being one part of the overall picture.

The bone marrow issue is a pretty big part of that same picture. Even if my haemoglobin count had been healthier, I wouldn’t have started round two of chemo. That’s because my neutrophil count too was below the level that’s deemed safe to carry on with treatment. Neutrophils are the white blood cells that fight infection.

The fact that capecitabine can also cause anaemia and neutropenia is an additional complication. It’s hard to determine precisely how much of what’s happening on the blood front is caused by the cancer and how much is down to the treatment.

As well as having the transfusion, I had an injection of the white blood cell booster, filgrastim. I’d been used to having this as standard under my previous treatment but we’d gone without during this first cycle so we could see how I’d manage on the neutrophil front under the new treatment without support. Not brilliantly, it seems.

So what’s next?

Well, for starters I get to enjoy the extra energy that comes from having two bags of healthy blood coursing round my body. There’s no denying I’m feeling perkier than I felt last week. There is, literally, more “blood in my cheeks” – a saying I’d never really thought much about until now.

On a more serious point, I go back for more blood tests on Monday to see how things are looking and we’ll see what the consultant recommends when I see her on Tuesday. 

Hopefully I’ll be able to go back on treatment. None of this is abnormal in the context in which it is happening. As with many powerful drugs, it can take some time to find the right dosage of capecitabine. I guess there might at least be a discussion around that. As it was, my starting dose was 85% of what it might have been.

As for side effects that I’d notice, I’m relieved to report that I’ve nothing to report. I have been aware of a little bit more tingling in my feet than usual but I can’t at this stage say that it’s anything other than the mild chemotherapy-induced peripheral neuropathy I have from the original treatment I had for primary breast cancer in 2015. It can get worse in the heat and when I’ve been doing a lot of cycling. The weather’s been great and I have indeed been cycling a fair amount.

Talking of cycling, I’m planning on putting this transfusion to good use in much the same way as I did with the last one. It’s midsummer weekend and a long bike ride is on the agenda for tomorrow. When I’m out there, I’ll be even more appreciative than usual that I’m very much still in the saddle.

 

Chocolate deliveries, bike rides, giraffes and scans

I have taken delivery of not one but two substantial amounts of chocolate over the past week or so.

How so?

I posted on facebook that I’d had to enlist our elder son to buy me some chocolate because my husband, who’s doing the shopping at the moment, eats too healthily and it just doesn’t occur to him to chuck a couple of chocolate bars in the trolley as he makes his way round the supermarket. It took a while, but at least now he does deign to bring home as standard a couple of packets of biscuits – but still no chocolate bars. 

Now I’m no addict, but I do have the odd bar on an ad hoc basis. However, I can’t currently indulge that habit while we’re in the midst of this coronavirus pandemic. My immunity is low as a result of the anti-cancer treatment I’m on and while I do go outside quite a lot now for walks and to exercise, I generally tend to not to go into shops. So no impulse buying of chocolate bars for me!

The photo I posted of me looking gleeful holding the bars my son brought back for me made a lot of people laugh and sympathise.

A couple of chocolate-loving friends – a huge thank you again, you know who you are! – were clearly feeling my pain to such an extent that they took things a step further and actually sent me supplies. We haven’t laughed so much in ages. My husband says he’s going to post that he’s got a craving for beer.

As you can see from the photo, I am now spoilt for choice. And that’s just one box.

I’ve given some away, the boys and I have been partaking, and the rest are “hidden for safe-keeping”, if you get my meaning. 

On the micro level things are still going largely fine on the lockdown front.

There are the chocolate deliveries for a start. Also, I’ve got most of this week off work and the weather is glorious. The roses in our garden have started blooming; they are gorgeous and there are dozens and dozens of buds, so it’ll only get more and more beautiful. Don’t look too closely or you’ll see all the aphids.

Yesterday I went out for a bike ride with a friend that involved seeking out and tackling the not insubstantial hills of south-east London, around Crystal Palace. There was blazing sunshine, there’s still far less traffic than there normally would be, and we enjoyed some incredible views over central London from the tops of the hills. 

We slogged up a fair few hills (with my friend overtaking me every time) and were rewarded with some lovely descents (with me doing the overtaking here). Before heading home, we bought some take-away coffee and chilled soft drinks and drank them in the welcome shade of a tree in Dulwich Park. It felt like we were genuinely on holiday.

On another bike ride, this time with my husband, we cycled past London Zoo in Regent’s Park and were delighted to see that the giraffes had come out for a stroll. There are two and there’s a sign there with their names on (I’ve forgotten their names*). Like everything else, the zoo is closed but we shouted over the gate and asked the zookeepers in attendance which was which. We don’t know, they told us excitedly, we’re from the other side of the zoo and don’t often get to see the giraffes. Their excitement was lovely to see.

On yet another ride into central London, we enjoyed great views of the river.

Those clear skies are good to see but they’ve come at a dreadful human and economic cost. We must never forget that.

Part of the reason I took time off work this week was that I was already taking time off to have scans. It’s that time again. I had a half-body PET CT scan this morning and tomorrow I’ll have an MRI scan of my spine. Both tests are to check to see whether there’s been any meaningful spread of the metastatic breast cancer I was diagnosed with just over a year ago. If there has been, we’ll be moving on to the next appropriate line of treatment.

I tell myself that I don’t generally get what’s known as “scanxiety”, ie worrying in the run-up to having the scans themselves and then again while you wait for the results (a week in this case). However, I really don’t think you can avoid it entirely.

You think it’s all fine then you realise you’re more argumentative at home than usual – and as those of you who know me are well aware, I’m pretty darn argumentative at the best of times. Or you’ll catch yourself doing too much forward thinking, dwelling on things you usually manage not to think about. Realising I’m doing this is usually enough to bring me back to the present. You just find yourself doing it more often than usual around scan time.

In this particular present, there’s a hedge that’s needs trimming out front. And afterwards, of course, there’s chocolate to be had as a reward!

* The giraffes are called Molly and Maggie, London Zoo told me in a reply to my tweet asking what their names were! I love Twitter when it works like that. Thanks to London Zoo for the reply!

Hey, hospital, where’s my blood?

I should have been in my local hospital in south London this afternoon having my sixth monthly cycle of treatment for the secondary breast cancer with which I was diagnosed in April. Instead I was sitting round the corner on the high street having fish and chips in a great little chippie.

Why? Because the hospital has seemingly lost the blood I had taken shortly after 0800 this morning for testing to see whether I was OK to go ahead with treatment this afternoon. I had a second lot of bloods taken early this afternoon and my treatment appointment has been rescheduled for 1100 tomorrow. I’ll hear from the hospital this evening only if the results mean I can’t have treatment.

Thus the fish and chips. Comfort food was needed to calm me down.

I’m over it now but at the time I was both frustrated and upset and I’m afraid I was initially less than polite with the poor registrar who saw me and had to try and work out what on earth was going on. I hope I caught myself in time; I have also since apologised.

It didn’t help that while I was waiting to be seen, I’d to listen to the inanity that is Loose Women, which was on in the TV in the waiting room. Among the topics for discussion on the chat show was whether it’s ok to dump your hairdresser. I swear I heard someone say it was easier to cheat on your partner. I’m sorry, but ffs.

You psyche yourself up massively for these appointments. What will the blood test results show? Will my tumour markers be up? If so, what might that mean? Will we go ahead with the next cycle of treatment or not? To be fair, this is the first time anything like this has happened. Everyone was very apologetic and keen that the alternative arrangements were as convenient for me as they could be. 

They say you shouldn’t sweat the small stuff. Was this small stuff? In the grand scheme of things it was, but for a while it felt like big stuff to me.

I just got back last night from a short cycling holiday in Spain and I had today and tomorrow – and indeed this coming weekend – meticulously planned. It’s our older son’s 21st birthday on Saturday and we’re having a small family gathering that evening. On my list for tomorrow was to spend a couple of hours’ gardening (the garden’s a mess), buy helium balloons and party accessories, buy food and cook for Saturday, get some photos printed, sort out a present and, oh yes, meet my mum, who has dementia, off the train from Glasgow at Euston at 1600 and bring her and a bike (my brother’s bike, not my mum’s!) back to the house. Thankfully my brother will be there to help me get get my mum and the bike – and me – into a taxi.

On treatment days, I’m usually at the hospital for a couple of hours. On those days, I generally do nothing other than have treatment and relax around the house. Treatment’s generally not painful but it’s not an easy day. I have one drug administered as two injections, one in each buttock, each of which takes a couple of minutes to administer. I also have an infusion (as you do with chemo) of a bone-strengthening drug – that’s usually over and done in half an hour. The oncology nurses are incredibly caring and careful doing the injections and finding a good vein into which to insert the cannula for the infusion. But while generally none of it is painful, it’s certainly not pleasant.

Usually I have bloods done one day then see the consultant the following day with a view to having treatment later that same day. Ironically, this time round, the consultant had very accommodatingIy arranged for me to have everything done on the same day. This was so I could go on the cycling trip. I came back late last night and went down to the hospital first thing this morning to have blood taken so the results would be ready for my appointment with the consultant (or in the event with the registrar) a few hours later. Luckily I live close to the hospital and can easily get there and back.

There’s plenty of good news. I feel incredibly fit and well. Not only am I doing lots of cycling, I’m also running and I’m even playing tennis again. Back when I was diagnosed, I really thought my running and tennis days were over. On the cycling front, I’m incredibly touched that the two clubs I ride with are organising a joint 100k ride this coming Sunday (half way through Breast Cancer Awareness Month) to raise money for research into secondary breast cancer.

The cycling holiday, organised by a company called Mellow Jersey, was fabulous. The feeling I had hurtling downhill on my bike at almost 60 kilometres an hour will take some beating. As will the feeling of triumph at the top of a steady climb of around eight kilometres. I was by far the slowest in my group on the hills, but someone has to be last and really I was happy just to be there. When I was first diagnosed, I had no idea whether I’d be in a position to do something like this ever again. Cycling more than 300 kilometres over four consecutive days would have been inconceivable just a few months ago.

But where’s my blood? I know big institutions can’t be totally efficient but you have to wonder where the two vials of blood are that I had taken this morning. They have to be physically somewhere. The department that took them said they were delivered to the lab but the lab claimed to have no trace of them. Like lots of lost things, they’ll probably turn up and, in this case, we’ll end up with two lots of results on the system.

As for me now, I’m off to do some of the many, many things I had planned to do tomorrow. Hopefully I won’t hear from the hospital this evening and treatment will go ahead tomorrow, we’ll all have a lovely time with the birthday boy on Saturday evening, and we’ll have a great bike ride on Sunday.

Getting an incurable cancer diagnosis is not “a relief”

I’ve heard reports of people who’ve had cancer saying it came as a relief when they were told – perhaps many years after their initial treatment – that their original cancer had come back and was now incurable.

The reasoning behind this sentiment is that some people have such a bad time worrying that they might suffer a recurrence that when it actually happens, they’re relieved as it means they can at last stop worrying about it.

I don’t know if the accounts are true. As someone recently diagnosed with metastatic cancer, I really hope they’re not. It’d be too sad if they were.

Not everyone suffers from it, but fear of recurrence after you’ve been treated for primary cancer is totally normal. As everyone reading my blog should know, it’s broadly true that once cancer spreads beyond its original site, it can no longer be cured. Secondary cancer can be treated and held at bay for a certain length of time but you won’t get better. For as long as you are alive, you will be living with incurable cancer and everything that entails – psychological as well as physical. You’ll die of it or at the very least with it. So of course you’d be scared it might happen.

However, if your anxiety is so bad that you genuinely feel you’d be relieved to be told you have incurable cancer, I would urge you please to seek help. Actor Kathy Bates told a major cancer conference recently that “life after cancer is a precious gift”. If your anxiety around fear of recurrence is preventing you from seeing that, you owe it to yourself to do something about it.

So-called cancer survivors – I never liked that term – talk about “waiting for the other shoe to drop”. That’s the feeling that at some point down the line – five, 10, 20 (or in my case just over three) years – you’ll be told your cancer has come back and can’t be cured. I completely understand the waiting-for-the-other-shoe analogy, but fear of recurrence shouldn’t prevent you from enjoying the currently “no-evidence-of-disease” life you do have.

Let’s be frank. With metastatic cancer or “mets”, the issue is how much longer you’re going to be alive. With fear of recurrence, regardless of your risk, you’re worrying about something that might never happen.

After my treatment for primary breast cancer ended, I never suffered from “survivor’s guilt”, that feeling that some people have at having survived a life-threatening event that has taken and continues to take the lives of so many others. However, I suffered very badly from fear of recurrence. For a while I could think of little else. I wrote about it extensively. Eventually, I sought help.

As I’ve written before, I realised that if my breast cancer did come back, I’d far prefer to look back and see I’d made the most of the “in between” time than to look back and regret that I’d spent that time worrying. I went on two courses, run by two breast cancer support organisations, Breast Cancer Care and The Haven. I learned strategies for coping with anxiety that I still find invaluable. I also talked to a counsellor. I learned to stop worrying. If that hadn’t worked, the next stop would have been my GP.

“Moving forward” after your initial treatment has finished is not easy, but you have to try. While it’s totally normal to go through a period or periods of anxiety, it shouldn’t be a permanent state of affairs.

There’s a saying that no-one on their death bed looks back and wishes they’d spent more time in the office. I think it’s the same here. Surely no-one diagnosed with incurable cancer – or indeed any life-limiting illness – looks back and wishes they’d spent more time worrying that one day the event they were dreading might in fact happen.

Grounds for optimism and a fantastic bike ride

Today I started my fourth 28-day cycle of treatment for the metastatic breast cancer with which I was diagnosed in April.

I appear to be responding well to the combination of drugs that I’m on. The blood test results I got yesterday in advance of treatment today were all encouraging. They showed that everything that needs to be down is down – including the all-important breast cancer tumour marker – and everything that needs to be up – including my haemoglobin level and white blood cell count – is up. Also, I continue to be totally pain free.

I no longer take anything for granted. I know things can change quickly in this game but there are grounds to believe that this treatment might keep the cancer in check for a good while. The awful thing about the beast that is advanced breast cancer is that you can never tell how long “a good while” might be. That said, there’s no doubting that we’re in as good a place as we could optimistically expect to be at this particular point.

The breast cancer I was treated for in 2015/16 has spread to my bones and bone marrow.

The implication on the haemoglobin and neutrophil front from these latest blood test results is that my bone marrow is under less stress due to the action of the drugs on the cancer. The debilitating pain I had in my right hip vanished long ago and may not even have been cancer. On top of all that, there is now the possibility that what we thought was cancer in a lower vertebra and was causing intense pain initially may also not have been. So the focus is on my bone marrow and on two vertebrae in my upper spine.

All things going well, as with the last cycle I won’t see the consultant for the whole of this cycle. And I’m down from two to one mid-cycle injections of filgrastim, the white blood cell booster. Also, with advanced breast cancer you have periodic PET-CT scans to determine whether the cancer has spread. Given the blood test results and the fact that I’m in no pain means we’re delaying my first repeat scan by a couple of months.

It’s been a great four weeks. We’ve had a lovely holiday in Spain*. Our two boys got their first-choice accommodation at the universities they’ll be heading off to in September. I’ve taken unpaid leave from work to allow me to make the most of the summer; work has been incredibly supportive in light of my diagnosis.  I’m continuing to do early-morning swims with friends at Tooting Lido, one of the country’s largest outdoor swimming pools which happens to be a 15-minute walk from where I live in south-west London (see photo from this morning – the water was cold despite the sun). Also, I’m planning a trip to the US in September to visit two aunts, one of whom is also my godmother.

The highlight, however, has been cycling the Prudential Ride London – Surrey 100-mile bike ride at the beginning of August. Given the circumstances, I couldn’t be happier.

Ride London was meant to be the icing on the cake of a summer of cycling. However, I had to pull out of the two big events I had planned to do in June and July and Ride London turned out to be a big event in itself.

When I got my diagnosis in April, my head was not in a good space. I also had anaemia which meant I very easily got tired. At best, come August, I thought I might be in a position to try the shorter, 46-mile version of the route. In the end, I got my head in gear. In addition, a blood transfusion gave me an energy boost and the confidence to get out and start training again.

I was delighted I was able to do this ride – as you can tell by photo of me at the finish line at Buckingham Palace. It’s on closed roads, some 32,000 cyclists take part and while it’s a bit chaotic, it’s a great event. This is the third consecutive year I’ve done it.

It’s quite hard to get your head round the fact that you can comfortably cycle some 100 miles while having advanced breast cancer. I guess I have to thank modern medicine; a consultant oncologist who clearly thinks that if you think you can do something you should give it a go; incredible support from friends and cycling buddies who took me out on training rides, encouraged me, and had more confidence in me than I had in myself; and, I have to concede, curiousity (can I do this?) and extreme bloody-mindedness (I can do this. I will do this.) on my part.

Sometimes you feel like you’re two different people living two different lives running in parallel. One’s busy training for and doing 100-mile bike rides and the other is undergoing treatment for and living with an ultimately incurable disease. But of course it’s all just you.

There was no guarantee whatsoever I’d be in this position at this stage. It’s early days and, as with anything in life, nothing lasts forever. We just have to embrace the good times while we can.

*I had to self-inject filgrastim on Aug 6th and 20th and I didn’t want to traipse through cauldron-like Europe with injections that needed to be kept refrigerated. So we left the second injection in the fridge at home and went on a ten-day road trip in central and southern Spain from Aug 9th to 20th, during which we spent lots of time with various sets of good friends Andy and I first met when we both lived in Spain in the mid 1980s. We couldn’t have had a nicer time.

So how did it all happen?

Here’s how I found out I had secondary breast cancer.

I developed backache and a sore right hip in mid-March while I was on my first ever overseas cycling trip, in Mallorca. The week-long trip was the first proper phase of the huge amount of training I was planning to do over the following few months that was to have culminated in a long-distance, three-day charity bike ride in France in July.

Initially I put the pain down to a mix of factors. For starters, while I’d done plenty of indoor training, I hadn’t ridden much at all outside or for any distance over the winter, and here I was doing back-to-back 50-75 mile rides involving quite a few hills. Also, I wasn’t using my own bike. While the rental bike was far better than mine and I loved it, I figured I was probably riding in a different position and that that was part of the problem. I hoped I’d just strained my back and hip and that it would soon get better. Interestingly – and fortunately – while the pain was at times quite bad, there was no pain at all when I was on the bike and cycling.

The pain persisted when I got back to London, although it would come and go. The most common place to which breast cancer metastasises or spreads is the bones and I knew backache was a potential symptom of it having spread to the spine. The pain was worse at night and when I was lying down. I did some reading and discovered that these too were signs of “bone mets” in the spine.

I very rarely get backache of any kind. Pretty quickly therefore, I decided to contact the consultant oncologist who treated me for primary breast cancer in the summer of 2015 and ask her advice, hoping all the while that it was just a sprain and that it would go away soon.

That was in late March. The consultant said it made sense to investigate further, so I had some blood tests done the following week.

The following weekend, I held a games afternoon at home to raise funds for the charity I was going to be doing for the bike ride in France in July. Other than the intermittent back ache and the periodic hip pain (the latter had in fact almost gone by then), I felt as fit as a fiddle. This fundraiser had been planned for ages and, at that point, while I was worried, I was still hoping the remaining pain would disappear with time.

That hope all but disappeared when the consultant subsequently called to say some of the blood results “weren’t entirely normal”. It made sense to follow up, she said, and a PET CT scan was being arranged for the following week. The writing was on the wall.

Despite this big shadow hanging over us, my husband and I managed to have a lovely Easter. The pain in my right hip had gone away completely at this point. As for the pain in my back, it sometimes disappeared for days at at a time, it always came back.

In the now forlorn hope that I would still be doing the various cycling events I had planned for the summer – or perhaps it was just to make myself feel better – I went out training on three of the four days of the Easter weekend. I even set myself a new speed record, reaching just over 40mph on a descent in Surrey.

My husband came with me on two of the rides. We don’t usually ride together but I think we were both aware that our lives were about to undergo a massive change and wanted to enjoy each other’s company while things were still relatively normal.

I had an appointment with the consultant the day after the Easter weekend, on 23 April. This was a couple of days before I had the PET CT scan and it was to have been my regular annual review with her. The consultant knows from having treated me before that I like facts and straight talking. So when I asked what she thought the problem was, she told me that, going by the blood test results, she strongly suspected that the breast cancer I’d been treated for more than three years earlier had spread to my bones and infiltrated my bone marrow. We even talked through potential treatment plans.

Among other things, the level of a specific breast cancer marker (CA 15-3) in my blood was very high. While this was “meaningless in itself”, I also had anaemia. The two things together clearly spelt trouble.

A week later, and the results of the PET CT scan confirmed what the consultant had predicted – “bone metastases and bone marrow relapse”. As well as there being cancer in my bone marrow and in three vertebrae, there is a lesion in my left-side rib area and there are “areas of less significant scattered bone disease”. As for my right hip, while there are no obvious signs of cancer in the hip itself, the pain may well be related in some way to the diagnosis. Then again, it may not be.

Thankfully our two young-adult sons were away at the time. We had time to digest the news ourselves and to plan a strategy for breaking it to them.

Since the PET CT scan, I’ve had numerous additional blood tests, a bone marrow biopsy, an MRI scan of my spine, and I’ve started treatment.

I have, of course, had to withdraw from the charity bike ride in France in July. More on that later.

The “repellent strategy” of counting your blessings

I’ve just finished reading a novel in which the protagonist refers in the opening page to the “repellent strategy” of counting one’s blessings.

It’s as though the people who recommend you do this “really believe a dramatic loss can be replaced by the renewed appreciation of all that one has been given”, the character says.

I got what she meant immediately.

I’ve never been a fan of counting one’s blessings. I always felt it was akin to tempting fate. Before now, though, I’d never heard the sentiment expressed so articulately.

I think back to my state of mind for a good while after I completed seven months of treatment for Stage 3a breast cancer in February 2016.

Treatment consisted of chemo, mastectomy and radiotherapy and then daily hormone therapy – the whole caboodle. I’m at high risk of my breast cancer coming back and of it ultimately being the cause of my eventual demise. Have I mentioned before that breast cancer has an estimated rate of recurrence of around 30% and that around 11,500 women and a couple of hundred men die of this disease in the UK alone every year? Yes, you’ve mentioned it a few times, you say wearily. Well, from my point of view, it really can’t be said often enough.

Anyway, if you follow this blog, you’ll know that for a good while after treatment finished, I was in a high state of anxiety. I was convinced it was just a matter of time before my cancer turned up somewhere else in my body and started the process of finishing me off. There were plenty of good things in my life at the time, and I was well aware of them. However, the idea that simply focusing on them would rid me of my anxiety was laughable.

Tig Notaro is an American stand-up comic. Like me, she’s had breast cancer. She’s written about days when she could “only sit very still on my couch, trying to breathe. I felt like I was about to lose my balance and fall off not only the couch, but the planet entirely.”

I remember that feeling only too well. It wasn’t counting my blessings that helped in the end. Most fundamentally, it was acknowledging that this was a perfectly legitimate reaction to the traumatic events that I was experiencing. As newspaper columnist Annalisa Barbieri wrote just recently in The Guardian in response to a reader’s problem: “I think [advising you to] stop stressing about something that matters so much to you is asking a lot, and maybe you need to allow yourself to be who you are at this time.”

Scared was what I was and that was ok. Once I’d acknowledged that, I was able to take steps to deal with it all.

I knew that worrying was making me miserable and I desperately disliked being miserable. I realised that if my cancer did come back, I wouldn’t want to look back and see I’d spent the whole time between treatment and recurrence worrying. Also, and this to me was critical, it seemed that some people with far bigger issues than I had seemed to be coping better than I was. Of course, you don’t know how much someone is worrying unless they tell you but it made me realise there was no rule that said I had to worry myself sick over anything.

I took action. I talked to people about how I felt. I went on a course where I learned distraction techniques and devices for managing negative thinking and worry. I learned how to distance myself from my thoughts and I now have a good set of tools to help me fend off these bouts of fear, anxiety, dread – call it what you will – whenever they appear and whatever they’re about.

I still find the worry tree really helpful. I learned the importance of living in the now. “Today I am healthy, today I am well” is still one of my favourite mantras. Also, another health issue in the interim – microinvasive melanoma on my right calf – pulled me up short and made me realise the futility of worry. Worrying about one thing doesn’t stop other – potentially worse – things from happening.

And of course, exercise. Lots  of it, in my case. It’s always a massive help. Never fails to cheer me up.

Anyone who knows me knows I am extremely aware of, and grateful for, the many, many good things I have in my life. So how about some of the more important positives?

Last month I was signed off by the consultant dermatologist, having completed my one-year follow-up after being diagnosed with and treated for very early-stage melanoma last summer.

The chemotherapy-induced nerve damage I have in my feet hasn’t been anywhere near as bothersome these past few weeks as it’s been at other times.

My two teenage sons seem happy; sadly it seems that’s not a given these days among teenagers.

I couldn’t ask for a better husband… although I may change my mind on that later if he doesn’t bring something nice home for tea! Seriously, though, that is a very comforting thing to be able to say.

Finally, I’m fitter than ever – accounting for age, of course. I’m loving all the cycling, running and tennis I’m doing. My body let me down in the past, but for now it’s doing me proud. I took part in the Great Scottish Run in my home town of Glasgow last month (photo!) – running 10k in well under my target of one hour.

At the same time, life has its challenges. I won’t name them here but part of the key to being content is, I believe, accepting that ups and downs are normal. Also, it’s not all or nothing. You can be dealing with lots of problems and still be happy.

I think back again to when I was first diagnosed, back in July 2015. I’d walk down crowded streets thinking no-one else had a care in the world. I wanted to scream at people and tell them to wake up, tell them they had no idea how lucky they were, tell them to appreciate their good fortune. That was, of course, nonsense. By the time we’ve reached a certain age, most of us have “cares” of some sort or other, some far more serious than others. Most of us find a way of muddling through.

The main cause of my anxiety hasn’t changed, but my way of dealing with it – and with other potentially anxiety-inducing events – has. I can only hope my breast cancer doesn’t come back, despite me being at high risk of it doing so because of the stage it was at when I was diagnosed. I still think about that every day. Indeed there are days when I realise I’ve been thinking deep, dark thoughts for longer than is healthy. But it’s ok. I know what to do. Acknowledge the thoughts, remember they’re just thoughts, deal with them or actively move them away from the front of your mind and move mindfully on. And if they come back, just keep calm and do the same again until it works. Some days it takes longer than others to get back to “the now”.

Here are some examples of when distraction techniques are needed.

Every day I take a tablet containing letrozole, an oestrogen-blocking medicine whose ultimate objective is to reduce the risk of any breast cancer cells that may have escaped chemo and that are currently lying dormant somewhere in my body from becoming active. I get goosebumps every time I fill my repeat prescription. That’s another two months I’ve cheated this disease, I think to myself as I leave the pharmacy with my latest supply of little yellow pills.

That “I wonder if I’ll still be healthy then” thought comes sneaking in to mock me whenever I start thinking or planning too far ahead. It happened at work a month or so ago, when I heard we would be moving offices in early 2019. It happened more recently when some friends asked if we fancied going on holiday with them next February. And it happened again a few weeks ago when I put down a deposit for a cycling training camp in Spain next March.

March is five months away. In my world, that seems a long time. I take a calcium and vitamin D tablet daily to counteract the osteoporotic effects of letrozole. There’s been a mix-up with the prescription and I now have six months’ supply. That makes me feel quite uncomfortable.

This all makes you realise that so much of life is about planning for the future. If my cancer does come back, the fact I’ll have lost my deposit on a holiday or whatever will be the least of my worries so I may as well get on with enjoying the planning of it. I also realise how fortunate I am to be able financially to do these things.

And how about this? The book I quoted from at the beginning of this piece is called Unless, by the late, great Carol Shields. Reading some reviews after I’d read it, I discovered this was Shields’s final novel and that she died of breast cancer in 2003, not long after finishing it. I’d had no idea. The assumption is that she knew she was dying when she was writing this book that I so enjoyed. Finding that out really knocked me for six – especially when I realised we were at the same stage at diagnosis. Six weeks or so on from finishing the book, I still I find the whole thing really unsettling. Even writing this now, I have to make a real effort to stop my thoughts running away with themselves.

Also, many people including me were saddened and shocked recently by the sad and untimely death from breast cancer of the BBC presenter Rachael Hodges at the age of just 40. Tragedies such as these are, of course, desperately sad for the families and friends of the person who dies. On a personal level, though, you can’t help thinking that could have been – indeed could still be – me.

Rachael started a podcast with two friends who also have had or are having treatment for cancer called You, Me & The Big C – Putting The Can In Cancer. It was incredibly popular but I have to admit I could never bring myself to listen to it as I felt it was just too close to home.

It’s the same with those cycling socks that say “F**k” up the back of one and “Cancer” up the back of the other. I couldn’t possibly wear them. I’m still too scared of the beast to laugh at it or mock it.

So, in essence, happy to be here, loving life and all the good things in it. But never complacent or carefree, and always aware it could be snatched away at any time. I could count my blessings, but I’d rather not. Like millions of others, I’m just trying to deal as best I can with whatever life throws at me – the good, the bad and everything in between.

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.

A half marathon and feeling grateful

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

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

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

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

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

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

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

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

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

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

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

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.