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.

“Maureen is tolerating the chemotherapy remarkably well”… just not today

I’m sitting at home feeling sorry for myself, nursing a cough that has kept me – and my other half* – awake for the best part of the past three nights. I also have a cold, a sore throat, and the remnants of a couple of cold sores and some unbelievably painful mouth and tongue ulcers.

I’m consoling myself by drinking Lemsip a friend dropped off earlier (along with some flowers – Thanks!) and by reading the oncologist’s report to the surgeon following my mid-September appointment with her in which she writes that “Maureen is tolerating the chemotherapy remarkably well… and is feeling very optimistic and positive”. On balance that’s true, it just doesn’t apply today.

I had another appointment with the oncologist yesterday. Showing distinct sadistic tendencies, she determined – or rather, in the spirit of the collaborative doctor-patient relationship that we’re espousing, we agreed – that, despite my various ailments, I should still go ahead with tomorrow’s chemo session, the first of four with Taxol/paclitaxel.

Here’s a full list of the side effects I’ve experienced at some point or other during the four cycles of doxorubicin and cyclophosphamide I’ve had over the past two months.

• hair loss. That was always going to happen, it was only ever a question of when. I do still have my eyebrows, though, although they are much thinner than they were, and my eyelashes, but they’re really not looking great either.
• mouth and tongue sores for a few days each cycle. This last cycle was by far the worst.
• dry mouth. That really is quite unpleasant but it does give you an excuse to have ice lollies in October.
• tachycardia. I don’t think I’ve mentioned before waking up at night the first week after the first session with my heart racing. That was scary.
• metallic taste in mouth and change of taste. This has come and gone and really hasn’t been too bad at all.
• water tasting metallic. Easily manageable, just add cordial.
• feeling pretty whacked at times. Fatigue is one of the most common side effects of chemo, but this has been nowhere near as bad as I’d feared it would be.
• pain in my left arm along the vein where the chemo drugs go in. This lasted for around a week.
• an itchy rash on my chest and lower back.
• the big thing everyone worries about is “CINV”, chemotherapy induced nausea and vomiting. I’ve experienced precious little nausea and one episode of vomiting that I’m not even sure was linked to the chemo.

In one or more of the four cycles, I also had a sore throat for a few days, one or two days of my eyes being dry and sore, and the odd headache.

All in all, I’d say I got off lightly. If you’re reading through all of that thinking that doesn’t sound light to me, believe me, it is.

I’m anticipating a long day at the clinic tomorrow. Paclitaxel is given over three hours and, with the various the pre-meds and procedures, I’m estimating I’ll be there for best part of five hours. I hope to doze through a lot of it and catch up on some of the sleep I’ve been missing as a result of this cough.

The oncologist has warned me that with paclitaxel there could be further hair loss. So I could still lose my eyebrows and eyelashes. Let’s hope not.

And just to end, I think I may be developing conjunctivitis.

It really is just one indignity after another.

*I did warn my husband that if anyone was moving into the spare room, it was him. If he chooses not to go and then can’t get to sleep for my coughing, whose fault is that?!