David Gullen

Bodies are amazing. It’s  two months since I popped the last pill following my last chemotherapy session. Since then I’ve slowly been getting better and better. Right now I feel about 80-90% normal.

I write these pieces as much for me as for you. I have a loving family and many dear friends who want to hear how I’m doing, but I also need to order my own thoughts and check my opinions of things. meanwhile, please keep sending those positive waves, I loves you all.

Last month we went to FantasyCon, a weekend convention for fantasy, SF, and horror writers, publishers, and fans. It was great. It was also a bit overwhelming. It has been a long time since I was in a room with hundreds of people. So many people! Man, that did me good.

While I was there I was asked if chemo was still as tough as it had been in the past. A difficult question to answer beacuse I wasn’t there and I can only speak for myself. All I can say is that I was supposed to have ten treatment cycles but my consultant stopped it after nine because the side-effects were becoming dangerous. For me, that’s a definite ‘yes’. Chemo was brutal.

It’s hard now to list all those side-effects in my mind, but here goes:

Hair loss? It’s a given, no big deal.

My finger and toe nails fell off. Blood pressure would sometimes crash and I would faint or feel horribly sick, or even pass out. I lost feeling in my fingertips and toes (peripheral neuropathy). I was so fatigued I could not think or move. (FYI fatigue is not tiredness, sleep does not help.) One day I puked until I could puke no more, and then I puked again. Loss of taste! Partial hearing loss! (Hopefully temporary.) Visual migraines! Fungal infections! One of my eyes filled up with blood!

Oh yes, no fingerprints! If only I wasn’t so fagged out I could have done some perfect crimes. Maybe next time.

I put on 22 lb/10 Kg. Most of this was water retention (edema) in my legs. My knees looked like giant, soft dumplings, my calves were wider than my thighs. At its peak it rose into my chest and breathing started to get difficult. Walking was more than hard, every step hurt, I could just about pull myself up one flight of stairs. Because it affected my mobility so drastically, because it lasted so long, because it hurt, because it had such a big effect on my mental health, of all the side-effects this was the worst.

Somehow I managed to keep writing. Ten minutes here, twenty there. Not every day, not even every week. Some days just thinking about writing was all I could do, and on those days it was a small triumph to achieve that, and that was how I saw it.

Bodies are amazing. Take the pressure off and they bounce back.  My hair is growing back – I have eyebrows and eyelashes again. Finger and toenails are slowly recovering. The neuropathy is fading, the edema is mostly gone. I can put on my own socks.

Regaining your sense of taste is amazing. Everything smells so wonderful, everything tastes so good.

I had lost a huge amount of fitness and strength in those six and a half months of chemo, and my long-term medication causes muscle-wastage anyway. Once I was through it I was determined to get as strong and fit as I could, as soon as possible. Mostly, this was just for me, to prove to myself I could in fact recover to live my life, walk without pain, garden, open jars. I also need to be in good shape for whatever the next treatment might be. I’m heading towards the place where treatments can become more experimental, more radical. They won’t be offered if you’re physically incapable of, as my doctor says, tolerating the insult.

I’m swimming, rowing, using weights, and starting to jog. My first exercise sessions were very short but I proved something. My first time on the rowing machine lasted 5 minutes and I was so exhausted it took almost as long to get up. Now, at 20 minutes plus, I’m holding myself back from doing more as I follow my incremental plan. Six weeks ago I did my first Parkrun, 5K in 67 minutes of pure hard slog. My fifth run took just over 50 minutes. So far it’s been a PB every single time. Yes, I’m slow, slow, slow, but never as slow as the week before. It’s incredibly motivating.

The garden is coming back under control because I can now (mostly) help as I used to. This year in the house and garden, in everything, Gaie shouldered everything from housework to shopping, washing, cooking, planting and weeding. It was impossible for her to do everything, but she worked incredibly hard to make my time easier.  I’m so sorry she had to go through this, I’m so glad she was there.

Late summer, I planted late crops of purple beans, pak choi, lettuce and herbs. They are all flourishing. To see that makes me happy, that I could simply do it makes me happier still.

I have to unlearn a lot of things chemo taught me – that what I could do last month, or last week, was no longer possible. I’m running up against this all the time, it feels like it’s everywhere, every aspect of my life. Each time I push myself and discover that I can now do that thing I’d given up on it’s a small victory, a step to recovery, and somewhere inside me something heals.

I’m writing this in the garden, in mid-October. The sky is blue, the air fresh, and the sun is beautifully warm on the back of my neck. It feels like the year is having one final burst of high summer and I can’t help but wonder if it’s the same for me.

Yet for the first time in three years I’m not dreading the winter and the bad news it has brought in the past. If this winter is going to be the same, so be it. I accept.

Also, I have a plan. It’s quite cunning, it’s based on science and it might even work. If it does, I’ll let you know.

I can’t help but feel optimistic.

Just a little.

I love Queens of the Stone Age. Their music is straightforward but intricate, always promising to take you somewhere good, then taking you somewhere better, an alternative journey to a familiar place, so when you arrive you see things a little differently. We’re travelling down the side-roads that wind across and parallel the highway. Sunlight flashes through the trees.

Music has always inspired my writing, the vibe, the lyrics, the pure emotion: humour, love, anger, joy, and melancholy. I’ve come to realise that last is one of the defining emotions of great rock. Perhaps that is why it will be forever young.

The great thing about lyrics is they leave a lot of space for your own imagination. I once wrote a story in part inspired by a Hindi song called Mausam, by Nitin Sawhney. It’s a gorgeous piece of music and I determinedly refused to translate the lyrics until well after I’d finished writing because I didn’t want to risk the emotional landscape it had created in my mind and heart. When I dd, I discovered I wasn’t far off the mark. Music really is a language.

So – go with the flow. I’ve been thinking about this for a while.

The Thing I really hate about cancer…

One of the Three Things…

Among the Many Things I hate about cancer is that built inside it, right at the core, the boss-level challenge, is something that is the opposite of optimism.

I hate that it is so hard to forget. Partly that is the treatment which, right now, is all-encompassing. The pills, the routines, the schedules and appointments, the aches in body and soul. But what I really hate most…

…I’m going to take a moment here because I realise I’m using the H-word a lot here and want to say that yes, it a strong word, one of the very strongest, here it is justified. I don’t like coffee, I don’t hate it. I don’t like dogs. I fear them but I don’t hate them. And there are lots of things I really don’t like about cancer, but I don’t hate them. With this one thing my Hate is justified. The Hate is strong in this one.

… what I hate most is that having lived most of my life in anticipation of tomorrow this disease works hard to take that away from me. Slowly, slowly, one thing at a time, yesterday becomes a better place.

I used to be able to write every day.

I used to be able to use a broom for more than 10 minutes.

I used to be able to run up that hill I now struggle to walk. (And every time I do I’m wondering if I will have to stop halfway. But no way. Not yet, not today.)

I used to be able to…

If the optimism of tomorrow is being denied me, I still have the moment, that eternal and endless beautiful place called ‘Now’. The sun shines, shining always above the clouds, through the clouds, down on me. I sit in the garden and feel the warmth and see the life that heat and light bring. And when it rains I know my tree ferns are happy and that makes me happy too. ‘Now’ might not last for very long, but it also lasts forever.

And yet having these things pared away reveals life’s essentials. That has been an important gift.

People tell me I’m brave. Maybe, but if so, it’s an everyday kind of brave that thousands and millions of people have. I’m fortunate my passion for writing lets me express myself, but in all honesty so can everyone I’ve met since I’ve been under treatment, and every single one of them is worth listening to. Cancer is a philosophical, contemplative disease.

All I want to do here is let people know what it’s like for me in the hope it might help you, so you’ll be a little better informed about what it’s like if you, or you and yours have the misfortune to go through this. I’ll say it again: get tested, people[1]. You don’t want to come over here, there’s nothing to recommend it. Don’t be scared.

Go with the Flow. Yes, I will. The current is strong, but I’m a good swimmer and I can keep my head above the water. I just need to keep telling myself I’m not circling the plug hole.

Even if I am, it’s a way off yet. There are places you can see, and sometimes after a good hard look you can decide not to go there. Once, for me, it was the bottom of a bottle. This one, I’m not so sure. There’s no bottle I can put down. I still hope by some miracle, and it would have to be just that, that those currents may change.

And we Gullens are an obstinate breed. We just keep going, even when we’ve run out of road.

So not yet. Not today.

Fuck cancer.

~

[1] Cis, trans, intersex, if you were born with a prostate you have the risk. Get tested.

Trigger warning: This article contains the use of the F-word. Not so copiously as to be considered an ingredient, more of a condiment. Because why the fuck not?

Here we go:

Catching up yesterday with Phil, an old friend of mine, he said ‘I remain convinced that a positive mental attitude helps defeat the bastard stuff…’

I think he’s right, and it made me wonder exactly why.  I don’t believe I can cure myself of cancer with the power of positive thinking and nothing more. A positive mindset is not that. As the old joke about the man praying to his god for a lottery win ends, with his god saying ‘Meet me half-way, buy a ticket.’, it’s about giving yourself the best chance, and doing what needs to be done when it needs to be done, More importantly, it is still doing it when it is a physical and mental struggle to do so.

I have a three-week chemo cycle. I’ve just started cycle six of ten, so fourteen weeks out of thirty to go.  Well, thirty-one weeks, because this cycle was delayed for a week for reasons of being beaten up by chemo and secondary infections. I hated that week, I hated that delay. So far that week has been one of the mentally hardest weeks of this whole process, of my entire life and I wish I understood exactly why. Nevertheless, like all things, this too has passed. It has moved through me now and is gone.

What happens after my 30 weeks of chemo? I don’t know. Right now I don’t want to know. Some days these thirty weeks seem endless. One thing at a time. Roll on September.

Right now, two days after the chemo day at hospital, a ten and a half hour session, I’m at the peak of my drug regime. It eases off after a week, but right now it is like this.

Drug 1 – Twice a day, exactly twelve hours apart. No food or drink for two hours before or one hour after. (This is for the stage 3 drug trial I’m on.)

Drug 2 – Once a day, an hour before food.

Drug 3 – Twice a day, with food.

Drug 4 – Three times a day. No alcohol. (WTF? I hear you fellow hardened boozers writers say. Yes, people, this is indeed a very hard regime. Fortunately I only take this drug for five days out of fifteen.)

Drug 5 – At bed time.

Drug 6 – Anti-fungal ointment, finger and toe nails, twice a day. because I’ve lost half my fingernails and a few toenails thanks to drug side-effects. Gosh, this can hurt, because the skin under your nails is packed with nerves and the slightest knock is excruciating.

We’ve never seen nails this bad, my doctor said, then fetched three more doctors so they could all have a look. And take pictures.

Drug 7 – Skin ointment, twice a day, to stop the joints on my fingers hardening and splitting and getting infected.

Forty years in IT, I have a spreadsheet.

And not forgetting:

• the once-a-week pill.
• the anti-nausea drug I need to take 12, 3, and 1 hour before chemo. (Chemo starts at 3pm, that 3am dose is not my favourite)
• The four days of injections I give myself from next Monday to boost my neutrophil count – a type of white blood cell – to minimise immune system compromisation.

And then there’s the exercise.

There’s no such thing as cancer. There’s breast cancer, bowel cancer, lung cancer, prostate cancer, and all the others. Each has its own horrors, its specific treatments, and its demands for self-care. For prostate cancer one of the most important self-care regimes is exercise.

Standard prostate cancer treatment is hormone suppression, specifically testosterone. Apart from keeping us men manly, testosterone does useful things for everyone like maintain muscle mass, bone density, and energy levels. Suppress testosterone and all these things fall away relentlessly. Right now I’m nursing a non-healing/slow-healing spontaneous rib fracture.

The answer is exercise, lots of exercise. Weight training, swimming, walking, general cardio. As much as possible, as often as possible. For me this means most weeks I aim for three or four sessions, though I’m trying to swim more because I love it and so for me that exercise is easy. Being a member of the Thrive clinic also helps. This a unique exercise clinic designed for people with prostate cancer. Started and run by physio Emily Curtis, and cancer patient Chris Cottrell, it has helped me enormously.

The thing is, with muscle mass and bone density constantly eroding away, you have to work hard just to stay still. This will never end.

But fatigue is the thing. Some days I can’t get off the couch, some days my legs are made of lead and going up stairs needs a serious haul on the banisters. ‘Come on, you lazy fucker,’ I may be heard to mutter at times like these. Exercise counters the fatigue, but then there’s the fatigue making it so hard to: “Get up, stand up. Don’t give up the fight. Life is your right.” (Marley)

Half the time I’m amazed I manage to get anything else done in a day. As someone else said, cancer is a full-time job, lazy people need not apply. Neither, in all honesty, should their partners.

Some days I feel I’m not very good at any of this. Some days, some weeks, I fail and I sit there in my failure and think about what to do. This is the point at which Phil’s positive mind set comes in. Get up, stand up, try again, start again. Or not. Some people don’t, they simply can’t. Maybe one day I’ll be one of them. My choice.

So far my choice is that I’m doing my best to be a Weeble[1].

Because when the going gets tough, the tough say, ‘Fucks sake, here we go again.’

Thanks, Phil.

[1] Weebles wobble, but they don’t fall down.

Milford SF Writers are delighted to announce the 2023 bursary results. As a committee member it’s been a real privilege to be part of the bursary selection process, a serious and important process.

This year we had more applicants than ever, and we have invited some of them to re-apply in future years. If you are one of those people and find yourself reading this, please don’t self-reject. We really do want you to apply again.

My thanks also to the great generosity of the individuals and groups who have made the bursaries possible.

If you would like to support the bursaries, and also get your hands on some excellent SFF stories – including a never before published one from Neil Gaiman – then all you need to do is buy a copy of Eclectic Dreams.

This is Milford’s first anthology and we’re very proud of it. All profits going towards the bursary fund.

I 10 Q

This little instrument (about 7cm long) was an interesting attic find. It took me a while to work out what it is actually for.

Look through the lens beside the numbered wheel and you see a double-image of whatever you are looking at. Rotate the wheel and the images move apart or together.  Move them together, until they overlap and the number on the wheel by the marker shows the distance to the object in feet.

It is an old-school photographic range-finder.

The inside is complex, with a tiny, angled half-silvered (semi-opaque) mirror, springs, and brass fittings. I didn’t dare fully disassemble it even though it needed a good clean.

A nice little piece of precision retro-tech.

 

I also found this neat little angle-finding brass folding ruler. There’s clearly been a bit of tool abuse at some point – that blank edge looks like it’s been used as a screwdriver.

Again, it took me a while, then I noticed something unusual about this ruler. Can you spot it?

~