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.

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.

Just generally falling apart

Today I feel more like my normal self but recently I’ve felt I was just generally falling apart.

Let’s start with my teeth.

On the afternoon of what was already a difficult day (What a difference a year makes), I wasn’t best pleased to hear during my appointment with my dentist (Breast cancer does indeed “come with baggage”) that I needed two crowns… and that I really need to wear a mouthguard at night. Whaaaat? Apparently I’ve been clenching  my teeth to such an extent that I’ve damaged some of them, in some cases quite badly. The crowns are needed not only to prevent further damage but also perhaps even to save the teeth in question. Again, whaaaat? Was I aware my default position even while awake was to have my lower jaw clenched against my upper? Er, funnily enough, no, but now that you come to mention it…

I’d last gone to the dentist in February – ok, it’d been longer than the recommended six months but I’ve had other things on my mind – and no-one said a single word then about any clenching. Does that mean I started doing it quite recently? Possibly around the time of my diagnosis, in July? If so, can you really cause that much damage in such a short time? It’s often associated with stress, the dentist, who is aware of my diagnosis, says gently. Yes, I’m aware of that, I reply.

Now that I know I’ve got this “condition” – it’s called bruxism (at first it was fun but now all these new words are starting to annoy me) –  I’m obviously trying to stop it. But that only works during the day. As for the nights, well I don’t have any conscious control over what happens then and so I’ve already been fitted for a mouthguard.

The mouthguard will be a highly attractive piece of kit, I’m sure. It’ll no doubt do wonders for my self-esteem following my mastectomy and reconstruction. As if recovering from that and having various scars including one that’ll run hip to hip weren’t going to be challenging enough, I’ll also have to cope with a mouthguard. I hope it matches the beanie hats/chemo caps I already sometimes wear in bed (it’s winter, folks, and a bald head can get cold in the middle of the night). Anyway, it’s bad enough for me, but I don’t have to look at it all. Spare a thought for my poor husband. He must really be wondering if this is what he signed up for! He says it’ll be like sleeping with Hannibal Lecter. I have been a very compliant patient so far, but I’m struggling not to foresee problems on the mouthguard front.

So what else had been making me feel like a bit of a wreck since that final chemo session on 25 November?

Well, first and foremost there’s the numbness in my right foot, the result of damage to the nerve endings there from the chemo. For a few nights there this was waking me up about an hour earlier than the alarm clock was set for. The numbness comes and goes over the course of the day and while it’s not always what you could call painful, I am aware of it to some extent or another most of the time. I’ve also had a slight sore throat, a runny nose and a couple of painful ulcers on my tongue. They’ve all gone now. Then a couple of days ago, there was that famliar pre-cold sore tingle on my upper lip that had me running for the acyclovir. Thankfully that turned out to be a false alarm.

Now it has to be said that none of this is any worse than has happened before after a chemo session. It probably all seemed worse on top of the teeth-clenching discovery. I’d thought I was coping not too badly on the anxiety front, but this proved otherwise. That was a bit of a shock.

There was also the bone pain, a side effect of the bone-hardening drug I’d had at that last session. Although mild, I can’t not mention it. And let’s not forget the mess my fingernails and toenails are in. If you put all that together and add in the fact that I’m through with chemo and no longer feel the need to put all that effort into staying positive, I guess it’s not surprising I was feeling down.

The hair will grow back, the damaged nails will grow out, and the nerve endings in my feet should recover too, although it could take 10-12 months. It’s pretty ironic that the only permanent physical damage to date – the teeth – is not directly related to the cancer or cancer treatment but appears to be a result of stress. #collateraldamage #whosaidlifewasfair

I wouldn’t want you to think I’ve been a gibbering mess these past ten days, or indeed anything like it. But I definitely felt more battered and bruised than I’d felt at any time since starting chemo in mid-August… and very, very tired a lot of the time.

This may be clutching at straws, but I’m hoping for some cheer on one front. At the start of last week, I had a bone density scan. I start hormone therapy soon after my op on 19 December and the drug I’ll be taking increases your risk of developing osteoporosis. Before you start taking the treatment, you have a bone density scan to assesss how strong your bones are. This provides a benchmark against which to measure any weakening over the years you’ll be taking the treatment. The scan measures your bone mineral density and compares it to the bone mineral density of a healthy young adult and of someone of the same age and gender as you. Given the fact that I was pretty active for my age and that exercise promotes bone strength, I’m kind of hoping that, at this stage at least, my bones are in relatively decent shape. It could be a while before I get the results, though, and I’d better not speak too soon. Given that the rest of me seems to be falling apart, I’m taking nothing for granted.