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.

“Looking relaxed, happy and hairy”

I never thought I’d take being called hairy as a compliment, but when I posted a photo of myself on Facebook recently and a friend* commented that I was looking “relaxed, happy and hairy”, I had to smile. It’s nearly seven months since I finished the breast cancer chemotherapy treatment that rendered me bald (The great Sugar Loaf uncovering) and now I just look like another greying, short-haired, middle-aged woman.

I’ve already had one haircut and I’m close to needing another. The chemo has made my hair curly and everyone says it looks nice and thick. It really isn’t, though. In fact, the hormone therapy I’m taking causes your hair to thin, so that’s another delight to look forward to.

So am I more dark than grey or more grey than dark? I don’t care either way, but it seems the answer varies depending on who’s doing the looking. I come in after getting the haircut and younger son Finlay looks at me and says “It’s quite dark, isn’t it.” Five minutes later husband Andy appears and, subtle as ever, says “God, it’s really grey!” Go figure.

I still haven’t used a comb or brush. I towel it dry, add some ridiculously expensive “product” and off I go. I love not dying or colouring it.

TMadridhe photo you see here is the one I posted on Facebook. It’s from two weeks ago, in Madrid, and I’m standing outside the flat I lived in when I first went to live there almost 33 years ago. I lived in Madrid for three years in all. I met Andy there. I still have good friends there. I love the place. Andy and I were there a couple of weeks ago for a bit of a treat (If planning a holiday is a clear sign of recovery…). In all the times I’ve been back since living there in the 1980s, I’ve never felt the urge to go and take a look at where I used to live. This time was different, I guess because so much has changed in the past year. The door to the block of flats was open. I could have gone in. I didn’t, of course. Because you can never go back, and that applies as much to early last summer, before breast cancer came on the scene, as it does to September 1983.

Back to the hair. The other day Finlay greeted with me with “Ooh, bed head!” rather than “Morning, mum”. We’re moving on.

*Thanks, Brenda!

Acupuncture, tennis, a haircut and going back to work

Good things are happening.

The biggest thing to report on the physical front – and this is massive – is that the peripheral neuropathy in my feet that was caused by the chemotherapy drug paclitaxel has improved dramatically over the past month.

Don’t get me wrong; that painful throbbing and numbness in the balls of my feet and toes is still there, but to a much, much lesser degree. It’s nowhere near as painful as it was and it’s now only very rarely so bad that I have to sit down and rub my feet to try and ease the discomfort. I used to have to do that pretty regularly. It no longer wakes me up at night. In fact sometimes it’s not even there when I wake up. This is still slightly disconcerting as I’d got so used to it; I wake up and lie there wondering what’s wrong and then I remember and savour the fact that it’s no longer there. It’s a lovely (non)feeling.

Now here’s the thing. This easing off of the chemo-induced peripheral neuropathy has coincided with my starting acupuncture. I know those of you who know me well will do a double take on reading that but, yes, I’ve had three sessions to date and I absolutely love it. Regardless of whether or not that has anything at all to do with the improvement in the nerve damage in my feet, I have to say I have never in my life felt as relaxed as I feel during those sessions. I have them through a lovely charity, The Haven. I did wonder what I’d let myself in for when in one of the sessions I felt a needle being placed in the middle of my forehead right where a “third eye” might be if we had one (think Cyclops), but by then it was far too late. It was half-way through a session and, anyway, I was so relaxed by that point that I really almost didn’t care.

Ironically, the peripheral neuropathy is now at its worst when I’m running. The last five minutes of this Saturday’s 5k Parkrun were a bit of a struggle.

There’s plenty more good news. I’ve been back on the tennis courts twice now, albeit playing with the soft balls children play with when they’re learning. You won’t be surprised to hear that it felt really, really, really – I could go on – good. It was fine in terms of my arm and shoulder and abdomen (where the big scar is), both when I was playing and in the following days. On a related matter, the cording in my chest and arm is really loosening up. While certain stretches are still painful, I’ve more or less regained full mobility in my arm and shoulder.

I’d asked the consultant who’s in charge of managing my lymphoedema when I met her a couple of weeks ago whether I should play. The swelling is currently only in the reconstructed boob and surrounding area (Looking forward to a “much more symmetrical overall shape”). If it develops in your arm, the consultant said, it’s as likely to be caused by (over)reaching for a tennis ball as it is from lifting a too-heavy shopping bag. Her advice then? “Do what you enjoy.” That was just the encouragement I needed. It basically confirmed what the consultant on the radiotherapy side of things had said a few months ago (Should I play tennis? “Yes, just don’t play Federer.”). A few days later, I enlisted my lovely doubles partner to knock up with me and the following week the rest of the stalwarts of the ladies doubles team I used to play for also obliged. (Thanks, Mary M, Mary P, Monica and Julie, and thanks to coach Steve who suggested the soft balls! Hopefully it won’t be too long before I’m whacking those hard yellow balls again and back playing in the team.)

There’s more. Five months on from finishing chemo, I need a haircut. That’s happening later today. And this last one is really huge… I start back at work tomorrow. It’s time.

That’s about it on the physical front. What about emotionally? Well, thoughts of recurrence are no longer always the first thing that pop into my head when I wake up in the morning. When they do, I tell them to sod off. Sometimes it works. That’s a big improvement.

 

It went downhill from there

Not long after the excitement of getting back on the bike last Tuesday (In the end, the wig ditched me), things started to go downhill.

I’d been feeling really tired since starting radiotherapy towards the end of the previous week, on 4th February, but I started to feel physically unwell as well as tired last Thursday. Also, the reconstruction was looking red and more swollen than usual. Skin reactions to radiotherapy are common, but not that early in the programme; I was only five sessions in at that point. Things got progressively worse and they culminated in me being admitted to hospital this Monday evening – exactly half-way through my 16-session course of radiotherapy – for a short course of iv antibiotics to treat a rather nasty bacterial infection that I’ve developed of the skin and underlying tissue in and around the operated area.

I had a dose of antibiotics via iv injection every eight hours between arriving at the hospital late on Monday and leaving earlier today after I’d had the last of six doses (my doses were given at 10pm, 6am and 2pm). 20160216_063859The good news is that the infection is responding to the antibiotics. It hadn’t responded to a different antibiotic I’d been started on on Friday. I’m now back home, with a supply of oral antibiotics to take over the coming week.

I’m still tired – guess I’m stuck with that for a while – but otherwise I’m feeling almost fine. The extremely swollen, extremely red and extremely warm right boob is less swollen, less red and less warm than it was on Monday and the rash that covered nearly a quarter of my midriff looks much less angry and is receding. It really was quite impressive on Monday, but there are no photos, as there are things even I won’t photograph! Some areas feel a little sore and tender but it would hurt a whole lot more if I weren’t numb in most of that area following the operation back in December. Every cloud, eh?

For those who like details, I have breast cellulitis, a known but not common complication in women who’ve had certain types of breast cancer surgery. The consultant breast surgeon, who decided I should be admitted to hospital, said the infection needed to be cleared up “pdq”. (The consultant keeps trying to get rid of me but I keep coming back. I’ve now gone to him with one complication or another three times since he supposedly signed me off on 8th January, saying he’d see me in April for a three-month check-up.)

I’m aware this all sounds terribly dramatic. However, for most of the time I was in hospital – apart from the night I was admitted – I actually felt more or less ok, although you’d have found that hard to believe if you’d seen the infection.

This has been an interesting diversion in my breast cancer “journey” (I’m so sick of that term now). It has included:

  • two nights in hospital;
  • the best part of two days spent at home in bed with a fever and the shivers, either sleeping or just feeling really lousy;
  • another ultrasound scan, to see whether any fluid needed draining off – it didn’t;
  • a two-day break in radiotherapy while we got on top of the infection;
  • seeing two consultants who thought they’d seen the back of me for a while; and
  • more people than I care to remember examining my inflamed and burning hot boob.

I have had some lovely visits over the past couple of days… and the friend who came with me to hospital on Monday has finally accepted that I do have something serious wrong with me and that I haven’t just been slacking all these months!

I’ll start back at radiotherapy tomorrow. Coincidentally, it turns out that the machine was down both today and yesterday, which means I wouldn’t have had the sessions anyway. Maybe there was so much heat coming off me during my session on Monday that I caused the machine to shortcircuit! To make up the two missing sessions, I’ll have one this Saturday (they’re running Saturday sessions to work through the backlog) and they’ll add one on at the end. Assuming all goes to plan from now on, my final radiotherapy session will be on Friday 26th February.

Onwards and upwards.

 

In the end, the wig ditched me

I was feeling really exhausted and fed up on Monday evening and when I woke up feeling much the same on Tuesday morning, I decided radical action was needed. The bike, I thought, could be the answer. I would cycle to my fourth radiotherapy session. It would be the first time in around three months that I’d done any cycling.

Just making the decision made me start to feel better. I got the bike out and pumped up the tyres. I stuffed the pump and everything else I needed into a little backpack and, with my cycling headband* and winter cycling gloves on, I set off.

The bike, as always, is part of the solution (Love that bike!A lesson on living in the now). I loved every second of the 5.7 mile ride to the clinic, even the hill, and I felt great when I arrived. I locked the bike up, looked in the backpack for my wig to throw it on before making my way inside and realised to my horror that it wasn’t there.

I swear my heart skipped a beat. It was the same feeling of utter horror that I’d had when I was out having a meal with some friends to celebrate finishing chemo last November and realised that I’d forgotten to give myself my critical post-chemo injection (Emergency delivery of post-chemo injection – to the pub!). That time, my older son brought the needed item to the pub. That wasn’t an option this time.

I lost my hair to chemo last September. I hadn’t gone out in public without some sort of head covering since. I finished chemo at the end of November and so my hair is growing back, but I hadn’t yet taken the plunge. Now I had no choice. I simply (?) had to take a few deep breaths and go for it.

I remember thinking this must be what a panic attack feels like.

I phoned Andy for some moral support and, while frantically pacing the clinic car park, treated him to a monologue that consisted mainly of me repeating down the phone the same four-letter word over and over and over (think the opening scenes of the film Four Weddings and a Funeral). I then phoned a friend who’s a couple of weeks ahead of me in terms of treatment – the one who said she wouldn’t have worried about not having had the injection and would just have waited until she’d got back home. The two of them found it all highly amusing, which I have to say did calm me down somewhat. As they pointed out, I couldn’t have picked a more receptive audience for my wigless public debut.

Deep breaths taken, I walked in. It wasn’t easy. Of course everyone I met said how good I looked, how well my hair was growing back, etc, etc, etc. I could literally feel the tension fading away. And when I explained it had been an accident and how it had come about, it felt even better.

It turns out I’d put the wig in one backpack and the rest of the stuff in another. If you must know, I swapped because the first one clashed with the cycling jacket I was wearing! (Bet that surprised you, my fashionista nieces Louise and Shereen.)

I haven’t worn the wig since. And it’s such a relief. Perhaps something was going on subconsciously that morning, because just a few days earlier I’d written about how and why I couldn’t wait to ditch it (One’s changing relationship with one’s wig). In the end, the wig ditched me.

Whether the wig stays unworn depends, I guess, on how my hair grows out. But so far, so good, and I’ve got a story I’ll be able to dine out on for a long time!

*No helmet, I’m afraid. In the three months of having been bike-inactive for want of a better term, my helmet appears to have “got lost”. No-one in the house is taking responsibility for said loss, but I didn’t lose it and I’d bet my life Andy didn’t either. That leaves just two possible culprits. They know who they are. 

One’s changing relationship with one’s wig

Now that my hair has started to grow back post chemo, I can’t wait to ditch my wig.

Since my operation in December I’ve been wearing the wig less and less and now I’m looking forward to the day when, instead of transferring it from my head on to the mannequin’s head where it rests when I’m not wearing it, I assign it to the back of a drawer. It’ll likely be another couple of months, though, before that actually happens.

The wig took some getting used to when I first started wearing it (Learning to live with a wig), but I soon grew to love it. It was liberating. I could throw it on, give it a quick brush and I’d be ready to leave the house. Nobody – other than those I’d told – would know I had cancer. With a wig, I could pretend things were normal. I felt I was in control.

Now, nearly eight months after my diagnosis, seven months after my first chemo session and more than two months after my last, I’m getting a little tired of pretending. More than that, I no longer feel I need to pretend. I’ve long since come to terms with the fact that things are not normal. My breast cancer is now part of who I am and, rather than embrace the wig, I’m starting actively to dislike it. If I’ve been wearing it out – and I do that less and less – I whip it off as soon as I get back home.

My operation on 19 December was the turning point. I could hardly move for three days after the op and disguising my bald head was the last thing on my mind. I didn’t care who saw me bald – I had more important things to think about (Feeling a million times better than this morning, but what a struggle) – and I didn’t wear the wig for the five days I was in the hospital. I never wore the wig at home anyway, except when people visited, so when I came back from hospital and was essentially housebound for a couple of weeks, before I knew it three weeks had gone by with me having worn it only a couple of times. After that it seemed strange putting it on at all.

Since the death of my dad* almost four weeks ago (In Glasgow again, but for the saddest of reasons), I’ve spent a lot of time indoors in Glasgow in the company of close relatives. I didn’t really wear the wig much there either. And those times I did wear it, it inevitably ended up being passed around for all and sundry to try on!

Back home in south London, it used to be that if someone came to visit or knocked at the door, I’d rush to put the wig on. Now I just throw on a beanie hat… or if one isn’t handy, I don’t bother. The window cleaner, delivery men, the electricity meter reader… they’ve all seen me bald, and of course haven’t batted an eyelid. And if I go out for short periods locally – driving the boys to school, popping to the shops, going for a walk on the common or going round to a friend’s house – I just pop on a hat and go. It’s only when I go out for more prolonged periods that I wear the wig.

At this stage, I have a layer of hair on my head that’s around a quarter of an inch long. It looks ok, if you like the Sinead O’Connor look. It’s very, very soft, like a baby’s hair. I’ve been told it’ll soon go fuzzy or wiry and at that point you get it cut and it then grows in thicker. It’s VERY grey, although there’s also some near black in there as well. I don’t remember my hair being that dark. That said, I’d been colouring and/or highlighting it for so long that I’ve forgotten what colour it was originally. My eyelashes and eyebrows have also grown back, the latter really thickly.

When I’ve seen women in the past with hair like mine, I’ve always thought “Oh, there’s someone with cancer”. I now realise it’s more accurate to think that it’s someone who’s had, rather than got, cancer. By the time your hair’s that length, you’re through the chemo and probably also most of the rest of your treatment.

I’ll spend the next few weeks – or perhaps months depending on how it goes – deciding on such things as how to have my new hair styled and whether to have it coloured or leave it grey.

IMG-20160202-WA0009There are other questions to consider, too. What do you do when you go back to work? It could be a bit embarrassing to go from wearing a wig one day to sporting your original hair the next. And what if the wig really is nicer than your own hair?!

I still have plenty of time to think about it all. In the meantime, my niece Shereen has come up with a novel, ultra-Glaswegian alternative to the wig. Very becoming, don’t you think?

*I have a story about my dad and the wig, from my visit to Glasgow last November (I love Glasgow, but it’s not Geneva). I’d got up one morning and it simply did not occur to me to put on the wig or any other head covering. I was happily having breakfast with my mum and dad in the flat they’d been living in for less than a year when I realised this was the first time they’d seen me bald. Bless them, they hadn’t said a word. I apologised for not warning them in advance and explained that I was used to going bareheaded at home, to which my dad replied: “That’s nice, because it means you must feel at home here too.” He was right, of course.