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 convinced it was only a matter of time before my cancer came back and ultimately finished me off. That might still happen, of course, 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.

grinding-teethNow 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.bone loss 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.