A Week in Publication

Monday morning started on Sunday night, just as a reminder if I needed one that writers can often be found at their PC at midnight and, admittedly, relishing it. Although nothing as exciting as writing for me, I was catching up on admin from the day job.

No matter. My late night typing meant that I would watch the calendar flick from Sunday 22^nd to Monday 23^rd November, the day of Tea & Chemo's publication, and witness the Amazon Page flip from 'pre-order' to, Yes! Absolutely! Buy it now!

At one minute past midnight I clicked the link. I shrugged my shoulders: no change. Of course not. The day doesn't really start at 12.01 but at 9am. I'd check again in the real morning. I did. Having already checked at 12.30, and every few minutes thereafter, you know, just to be sure, until I finally wandered off to bed.

The next morning, publication day morning, I had a quick hospital appointment. It was no more cancer related than those pesky, potentially life-saving drugs giving me annoying side effects. Nonetheless, the irony of being back in hospital on my publication day wasn't lost on me.

And it transpired that I was to spend slightly longer there than anticipated. As I waited to be called, I heard the fairly earnest voice of a doctor directing a patient to, 'Breathe in through the nose, out through the mouth, that's it, well done.' I didn't like it. Nobody likes to hear other people unwell. But, ever the diligent writer, I forced myself to focus on tomorrow's talk which needed editing down from about three days in length to the requisite ten minutes.

More voices sounded and all of a sudden, a nurse rushed past, picked up the phone and called for the registrar to come immediately to the unit. I was worried for the patient now and also felt that I shouldn't be there, that I was intruding as the voices were just on the other side of a curtain.

Shuffling further back in my seat, I continued with my scribbles as inconspicuously as possible. And it was useful having no mobile or Wi-Fi signal at the hospital so that my page on Amazon had a break from my clicking for news.

A nurse explained that my appointment would be delayed. Of course. The other woman was much more in need of the staff than I was and besides, I was doing quite well with the rampant deletion of my drivel.

The same nurse ran past again. This time she called for the Crash Team. Now I was really worried for the patient. Moreover, other people arriving for appointments were being turned away. A doctor came to speak to me, asked if I wouldn't mind going to get a coffee and coming back in half an hour. Mind?  I took the stairs two at a time.

Ninety minutes after my appointment slot, I returned to the unit to the altogether softer sound of the same doctor's voice saying to the patient that if she ever came back to the unit, would she call first so that he could make sure he was on holiday, and with this I suspected the situation had taken a less sinister turn. The lady, excruciatingly apologetic, was discharged having recovered from her panic attack whilst having a cup of tea after her appointment.

I left the hospital two hours later than intended, happy I wasn't prone to panic attacks and slightly more confident that my talk might be over before tomorrow's bedtime.

My dentist's appointment followed suit, taking forty minutes instead of ten because my sparkly new mouth guard to stop me grinding my teeth at night (it's a long story) didn’t fit correctly and needed some re-moulding. By this time I was due to pick up my car from the garage. I'd taken it in for a new exhaust and it had emerged with a brand new set of ball bearings and four new tyres instead. Wholly necessary but more expensive. And the half an hour walk back to the garage was looking particularly uninviting through the pouring icicles.

Several times during the day I'd looked down at myself from above: oh, the glamorous lifestyle of a freshly published writer! And Tea & Chemo was still only showing as available to 'pre-order'.

Then came Monday evening.

Friends had organised a celebration in my local pub. With these people, in that pub, with the Tea & Chemo bunting, the Tea & Chemo cake and biscuits, my box of books (and people buying them) the cards and presents and excitement and abject giddiness, right there, in that moment, all the late night, early morning typing and the slap in the face rejections, were worth it.

Tuesday and D Day for the ten minute talk I mentioned. My brief was to inspire two hundred 14 and 15 year old students and their parents with my story of having a dream and going for it. Except these students were all award winners and I couldn’t help thinking that really, they should have been talking to me about hard work and achievement. The best, and only award I remember getting at school was for hockey: my half colours, note, not even the full ones…

It would be an accurate account to say I did a ridiculous amount of preparation for this talk. Engage a hundred teenagers for ten minutes, you say? The hours spent were directly proportionate to my fear. 'It's ok,' somebody consoled a few panicky days before, 'They'll all be on their phones.' That was what I was worried about. Actually, I had a ball. Nobody was on their phone and everybody gave me the courtesy of listening and many thanked me afterwards. Teenagers constantly, and usually, buck the stereotype I find.

Let's fast forward over a couple of days when Amazon still wasn't admitting to Tea & Chemo being published. Meanwhile, I was cursing webmail for not sending any of my e-mails over the previous two days, tantalising me with the first line of every incoming message yet refusing to show me anything else. And let's forget the hours, (was it days? It felt like days) spent in phone calls to the EE helpline, in the vain hope of cajoling 21^st century speed Wi-Fi into our house as opposed to the dribble reminiscent of the nineties. Let's gloss over these days because then it was Friday. Joy of joys, finally Tea & Chemo was leaving Amazon's grasp and so many wonderful people were posting on Facebook that their copies had arrived. 

And then this:

Tea & Chemo ranked 10^th in Amazon for Health and Fitness? From this point forward, I've been doing what I vowed I wouldn't do: checking Tea & Chemo's ranking every few minutes.

You know, it hasn’t been all tiaras and red carpets but, after a frustrating labour, Tea & Chemo has made it out into the world and yes, it feels every bit as sweet as I'd hoped.

Nope, it's gone

For anyone who's ever said, Nope, it's gone, or, Run that past me again, or, I didn't just say that, did I? and for anyone who's ever wondered why the tin of beans was outside the front door and the milk in the cupboard, a note about Chemo Brain. 

If you’ve ever had, or been around anyone who’s had, a touch of the Pregnancy Brain or its natural rite of passage: New Baby Mush, barely passing Go before it descends into Menopausal Mind Slush, then you are on the way to understanding the effects of Chemo Brain. Just magnify the lack of cognitive skills, difficulty in concentrating beyond the fourth word in any sentence and lack of recall for anything which happened say, over ten seconds ago, and you start to get the picture.

Experts aren’t sure what causes Chemo Brain, or if it’s even the chemotherapy itself – it may simply be the having cancer and any treatments for it - but it is recognised as a debilitating side-effect seen in cancer patients. There’s a good article about it on the Cancer Research UK website here.

I’m not your archetypal control freak. I yearn for those moments where I can take a back seat because somebody else has taken the reins. But I do like a certain control in my personal and working life. The moment my to-do list gets a little messy, it ramps up the stress levels. Chemo Brain certainly added a layer of stress to my life and I think that if you asked my children what the worst aspect of my treatment was, they’d say it was having a Mum who was away with the fairies. I couldn’t retain even the most simple of information – from whether I’d brought in the milk to where my children were.

And one of the most stressful things was, wait for it, the washing. Oh yes, when you can’t remember your teenage daughters having a pair of black skinny jeans to die for, let alone whether they were dry (or even if you’d washed them) and the party for which they must be worn was a few sweet hours away, it’s depressing. I was used to being on top of such matters, and being on top of those meant that I could concentrate on arguably more important things, such as work. In truth, every time my children flashed me that look of disappointment that I’d forgotten something, anything, again, it sort of broke my heart a little bit more. Maybe it was inter-twined with being a mother and having cancer treatment because when you have children (or a partner, friends or family), it makes you feel like you are a bad mother (or wife, friend, daughter or sister) sometimes. 

But please don’t despair. It gets better.

Almost the moment the other side-effects of chemo disappeared a couple of weeks after my final dose, I felt the fog lift a little, too. It would be wrong of me to pretend that I’m back to the old – skinny jeans you say? What colour? The black ones are in the machine as we speak, green ones are drying on the airer (I’d say two hours forty seven minutes and they’ll be dry as a bone) and the grey ones, sorry, still in the washing bag, we could spray them with Febreze? – ‘all-over-it’ mum. Cancer seems to lodge a lump of goo in your brain as its final (we hope) hoorah when it leaves. It’s a store for The Cancer Fear to be dissipated around the body whenever you cough, get a spot or have stiff legs, and dusts an annoying layer of fuzziness over all other thoughts at other times. I’m afraid hormone treatments, such as Tamoxifen don’t help either. Nor does a chemically-induced, premature menopause.

But none of that, categorically none, is a patch on Chemo Brain.

My advice? Be kind to yourself. It isn’t a failing; it’s a side-effect. It isn’t forever and life will feel oh so much better when it’s gone. There are strategies to help. Keep lists, lots of lists, and keep them by you at all times so that you don’t forget where you’ve put the list (!) Keep healthy too: the endorphins you release when you exercise are proven to improve cognitive skills and I certainly write better after a run. And water. I swear water cleans your brain. No scientific papers will back me up on this but I’ve experienced it myself regularly, so it must be true. Too much tea? The fog in my head is so heavy I can practically feel the weight. Glass of water? Instantly lighter. Try it, seriously, I think water is the ultimate medicine. And educate those around you. I think my children, even as teenagers, were too young to really understand what I meant when I said that I couldn’t remember. It was beyond their comprehension and life experience to imagine how this could be. But friends and family will understand and they’ll make allowances and even send you helpful text messages just to make sure you know where you’re supposed to be.

Chemo Brain isn’t as soft and cuddly as it sounds but, sixteen months post chemo, I can say with some authority that it does get better.

And remember, chemically induced or otherwise, you're probably not alone. 

I originally wrote this post for the Young Women's Breast Cancer Blog and you can read more about Sarah, its wonderful pioneer, here.