~To enjoy the light
you have to know the dark…..
A year ago this week I wrote this blog announcing to the world that I’d be offline for a while to have a real challenge. But, no matter how prepared you are to go into hell, it’s still hell.
I’ve tried for months NOT to write this blog post as some parts are too personal, it almost looks like I’m an attention seeking whore or that my life sucks. I’m not and it doesn’t and writing about this still keeps bouncing around in my head so screw it, here it is. Just maybe I can show someone that even in your darkest hour when there is no more hope, that it doesn’t have to be the end.
Grab some tissues, a pot of tea or coffee, go have a pee and turn your phone off, this is going to be a looooooong one……
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Missus e-bike was high as a kite when I arrived at the recovery room, it was hilarious to watch, she wanted another operation so that she could have another ice cream. The next three weeks went as smoothly as you could hope when they’ve just cut out a 2cm tumor and 2x lymph nodes (which were later found to have some cancer cells too).
The next phase was radiotherapy five days a week for three weeks. Going to the hospital every day to get zapped is a faff but it was really well organised so no big issues other than her being more tired than usual. The staff were eager to tell me what they were doing and show me everything the one time I went along for the ride. But, it’s scary to see just how many people are getting cancer treatment and we counted our blessings that missus e-bike “only” has breast cancer.
We celebrated the short break between the end of getting zapped and the start of getting poisoned by the chemotherapy with an evening of sushi and a quick weekend away.
31 October was D-day, The start of the first chemo series, the infamous AC cocktail (Adriamycine/Cyclofosfamide) eight weeks of getting this magic elixir every two weeks on Thursday. Each fourteen day block consisting of Friday was fine followed by four days feeling really shitty and lots of pain followed by eight days feeling slightly less shitty with slightly less pain. Followed by a day where missus e-bike started feeling almost human again before the next dose of poison. A couple of days after the second chemo I was getting sick of vacuuming her flat three times a day to clean up all the hair so it was GI-Jane time.
Great photo but it was only a matter of hours before she resumed her now renowned pose on the couch. From around 6 pm each night we’d go through the same routine. She’d fall asleep after dinner.
I’d suggest she go to bed, she’d spent an hour or two trying to stay awake and be sociable but sleep through most of it and eventually let me help her to bed, then she’d be awake again for five minutes before falling asleep with her phone 🙂 .
I spent most of the Winter sleeping on a mattress on her living room floor so that I wouldn’t wake her with my super snoring skills, her sleep and recovery seemed more important than anything else. We’d try to go for a walk every day, in November it would be for 60-90 minutes, by March is was no more than a walk around the block hanging on my arm.
By Christmas Eve when we started the next chemo series (12 x weekly Paclitaxel) combined with the start of the immune therapy (17 x Trastuzimab every 3 weeks) Things were starting to look up. A New Year was on the horizon and on paper this new “Lighter” weekly chemo meant missus e-bike wouldn’t go further down hill. Despite the smiles it was wearing us down. She was loosing lots of weight because she was generally too busy sleeping or the thought of food made her feel sick. In the mean time I was getting fat.
Why do you get fat when your partner is on Chemo?
Thats easy. You get home from a busy day at work. You ask what’s for dinner. “But you said you’d do the shopping”. “Shit, I did’. You drag your sorry arse to the supermarket rather than grabbing a well needed afternoon snooze. Go home, make dinner. Missus Chemo looks at your super healthy vegetable soup with contempt and says “I’m too tired and don’t feel like eating, looking at this makes me feel sick” …Fine, I’ll eat my soup.
Ten minutes later ” I fancy some Ben and Jerrys ice-cream(or other crap)”. “If I drag my sorry arse to the supermarket and buy some with you eat that?, you’re not getting enough calories”. “Sure”. Fifteen minutes and one tablespoon of ice-cream later, “meh, I’m not hungry do you want this”…….Another fifteen minutes later a halve litre Ben and Jerrys is missing in action. There’s a reason we don’t buy ice-cream, Dorito’s or Pringles 🙂 An hour later Missus Chemo is asleep in bed again and you settle down for a bottle of wine because you’ve made it through another shit day. (At my peak I’d converted enough junk food and booze to put on 12kg of extra bodyweight).
January was a dark place most of the time (pun intended). Work was too busy and stressful despite taking some days off and getting some free days off as care leave. But coming home from work and finding a weak and crying girlfriend on the floor wasn’t fun, “I just want a shit, my guts hurt “. One of the many side effects of the Chemo is that it kills all your mucus membrane, which creates a dry cough, itchy eyes and the most basic of human functions become a challenge.
The fourteen day ritual had now become a seven day ritual and this “lighter” chemo was proving to be anything but light. Each Saturday or Sunday the tantrum would start. “I’m going to phone the hospital first thing Monday morning and tell them I’m stopping with this shit, it’s horrible, its too much pain, I’d rather take my chances with Cancer”. I’d go through the same routine each week and talk her into waiting until Tuesday to phone the hospital but by Tuesday she was starting to feel better so I’d talk her into cancelling Thursday morning if you still wanted to stop. By Thursday she’d feel almost human again and just get on with it until the ritual started again at the weekend.
In the weeks around New Year it was becoming clear that I was struggling mentally so I used her afternoon nap on the days I wasn’t working as the perfect time to get out on my bike.
New Year was a suitable time to plan some goals for 2020 and a fancy overpriced new carbon fork for my MTB was some nice retail therapy. I also planned a 2 week escape to Spain in March around the time of the end of the chemo as a kind of R+R for me and as a little light at the end of the tunnel to keep me moving forward and get me training more and drinking less. Each challenge in the months after that I’d just think “hang in there, you’ll be alone on your bike in the mountains soon”.
Mid February I cracked, I was waking up in the middle of the night angry about things that had happened at work or wanting to send a rant email about everything at work that I thought was shite. I was also becoming uncharacteristically short tempered and impatient with people around me. I did the uncharacteristically smart thing and phoned in sick and used the two weeks before my holiday to slowly come to terms with the fact that it had all been a little too much for me to deal with and that just maybe I’m human too (discovering you’re only human at 45 is horrible, don’t try it). I also still assumed a couple of weeks in the mountains would help no end. Missus e-bike was still going through the same seven day routine but was usually feeling half human by Monday instead of Wednesday and I was confident that her parents could get her through the last two weeks while I was away trying to restore my sanity.
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As I rode out of Malaga and into the hills I felt all my troubles drop off my shoulders. I had an ambitious plan but it was do-able. A thousand kilometers and 30,000m climbing off road in 13 days would be barely possible but the perfect reset for mind and body, and the perfect warm up for other goals in 2020.
Three hours into the ride I was enjoying life and had wrote a clever innocent tweet during lunch ” Sometimes in life, even if you have a long way to go. Its good to look back and see what you’ve already achieved. #CTRLALTDELETEtour.”
If only I’d known Karma didn’t find that funny. Twenty minutes later during a descent on a gravel road I was thinking, ” maybe I should have put new brake blocks in for this trip” and ” The tire pressure is a little high, I’m skidding too much”. Just then I rolled into a long diagonal rain rut…… not a problem, gentle brake, cheeky little wheelie out of it, “ooh dear this is going to hurt”.
The front wheel skidded and the left side of the handlebars dropped, as my helmet and left shoulder crunched into the dirt I thought “shit, its about time I broke my collar bone I’ve been so lucky so far or will it be the damn ribs again” I saw my bike and feet go over my head in front of me while my head was still grinding along, my neck and back reached their bendy limit. I heard a crack. “Fuck, its the neck not the collar bone. Nice mess you’ve got me into this time dickhead”. As the dust settled I could feel my sore knee, hands and ribs. Apparently it wasn’t my day to die alone in the wilderness with a broken neck. Strike 1
The damage was painful and messy, my wilderness first aid kit is as light as I can get it and designed to do just what it did, stop me leaking, clean the wounds and patch me up enough to get to the next town. The next couple of hours were horrible. I couldn’t change gear with my right hand because the thumb was sprained or broken, I couldn’t brake properly with my left hand because the smallest two fingers where broken or the tendons damaged, three ribs were bruised or broken and my neck had a whiplash of sorts. The gravel rash on my knee, elbow and the cut on my elbow were more of a painful inconvenience than anything serious. Once outside the city of Antequera I was even tempted to ride on and wild camp somewhere. Luckily I’m older and more sensible than ten years ago so decided it best to get a hotel in town to clean myself up, have some cold beer and in the morning decide if I should go to the last hospital I’d see that week.
By morning a Doctor friend had done a facebook photo consult and said my little finger tendon was broken and that I should go to the hospital to get it checked out, that and the fact that my other thumb didn’t work anymore made a hospital stop a smart move, and cancelling my well needed break on day two, the even smarter move. The rest is history, I visited the hospital on Monday morning and was home again Wednesday afternoon and by Friday afternoon I was doing Zwift races on the indoor trainer.
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Missus e-bike came to stay at my place and had delayed her second to last chemo because she was feeling like shit and needed a break. Skipping a week felt like a holiday, she just needed a couple of days extra rest that week, it had all become too much for her. We were quite a team, I couldn’t do much without pain other than lie on the couch or sit on the indoor trainer, she didn’t have any energy.
Sunday night I started coughing at 3am.
With the first cough I moved to the attic just in case, shouting down stairs in the morning that she should go home after breakfast and we’d see each other in a few weeks if all went well, it wasn’t worth the risk of her catching whatever I was about to have as her immune system was zero thanks to the the chemo’s and immune therapy.
In the coming weeks my body impressed me with how many litres of snot in can produce per day and how painful coughing can be with bruised ribs. Missus e-bike also had her last chemo and died a thousand deaths in her last week. I wondered briefly where I’d picked up this “lung infection”, but it wasn’t complicated.
- 3 hours in a hospital, half that time in waiting room with 25 people, 3 coughing and on oxygen?
- 1 hour in a taxi?
- 4 hours in a busy restaurant on the Tuesday afternoon killing time?
- the nice lady at the hotel reception coughing on me during check out?
- 3 hours waiting at Malaga airport?
- 3 hours flight home?
To me it was clear I had Corona, I was suffering from some kind of lung infection but didn’t have a fever. By mid-March everyone was starting to see what Corona could do and the world was in panic with the views of hospitals in Italy, around this time I visited a dark place that no human should go.
I’d blown my nose for the 100th time that day and still snot was coming out. It was 3am and I was alone sweating to death in bed despite no fever, then the cough started again. It had been a hard painful cough for days but this time it was different, I couldn’t stop it, I struggled to grab a quick breath between coughs now and again and was getting light headed, I couldn’t breath. I thought “this is it, I’m not going to wake up tomorrow and someone will find me drowned in my own snot, I’m going to die alone here in this damp sweaty bed”. Strike 2.
Spoiler alert, I’m still alive 🙂
The next day it seemed smart to call my doctor, maybe they could help with medicine or something. Due to Corona protocol they were only doing telephone calls. “Do you have trouble breathing? ” “Only when I’m coughing my lungs out. Otherwise, I wouldn’t call it trouble, I’ve certainly lost 20-30% of my lung capacity but that was already huge because I was super fit a few weeks ago, so I can still get by”. “Do you have fever?”. “nope”. Then you don’t have Covid, just a lung infection and you should wait it out”.
An hour later I did a video call with missus e-bike. She was struggling after the last chemo, it was the worst so far and she was really weak. She’d been alone for two weeks apart from the hospital visit for chemo because we didn’t want her running the risk of getting Corona from someone.
She was so weak that she kept falling asleep during the conversation, and didn’t even realise it, I just wanted to reach through the screen and slap her awake.
Then it happened: “I’m so tired and sore I just want to jump off the flat but I’m too weak to get out of bed”.
I tried to make her laugh it off and change the subject by saying ” if you’re still alive next week I’ll throw you off the flat myself then at least one of us has had some fun”. She giggled and we talked about something else. We can now laugh about such a throw away comment but I know she was serious, and had I been there I’d have been tempted to help her upstairs so that we could both jump. I’d hit rock bottom, her one sentence finished me, I’ve never felt so helpless and useless in my life.
As I closed the computer and grabbed a beer, I found myself wishing I had a shotgun, it seemed that that was the only way out, or maybe I could rig something up in the attic with the high ceiling and hang myself? But the thought of someone else cleaning my brains from my lovely white ceiling seemed unfair and too egotistical. I found myself looking back on the last time time I’d thought of suicide and the contrast was hilarious. I’ve never said it out loud, but while cycling in the desert in Namibia I thought about killing myself, the reason was simple “I’ll never again be as happy as I am now, might as well quit while I’m ahead”. The contrast with then and now made me chuckle, I challenged myself not to make other peoples lives complicated by finding my cold dead body, and the last thing missus e-bike needed was to carry on with her recovery alone. Strike 3 I’m not out.
It was time to get my shit together and stop wallowing in self pity. I thought of a George Patton quote I’d once used and thought, “Time to bounce like a motherfucker”.
“I don’t measure a man’s success by how high he climbs but how high he bounces when he hits bottom”
~George S. Patton Jr.
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In the weeks after I started coughing less and started pretending to be human, missus e-bike also started coming back to life and I moved back into her flat in early April. My manager was kind enough to organise a work at home job for me for two months to reduce the chances of me becoming sick again or catching something else at work, so apart from the the hospital visits once every three weeks and the man delivering the groceries every week we had a three month strict lock down together ontop of the March separation. It was time to start putting our life back together again.
The future:
A year on missus e-bike is in theory cancer free and recovery nicely from the “treatment” that almost killed her. Now she probably has a year or more of recovery from all the stuff they don’t talk about and the side effects, pains, irritations, “chemo” brain, oedema and the other good stuff. But, she’s walking again and getting into virtual cycling “I don’t understand why people still cycle outside with traffic and weather when you can do this” and more importantly looking to the future rather than next Thursday. Though every time she coughs I still shit my pants wondering if its Corona, if she gets it like I did she’s fucked.
Now five months since my “mysterious lung infection that wasn’t Covid” I’m recovered from the depression, brain fog and crazy thoughts in my head that lasted a while after the worst of the infection, it seems Covid is not just about the lungs. I’m still more tired than I should be from work, my blood oxygen is almost at the level for a normal person and my lungs are still buggered. I can ride 6-8 hours a week very slowly which gives me faith in my recovery even if it might take months or a year. But, if I do a hard ride or do intervals, I regret it for days as my lungs start burning again.
I’ve adjusted my training program twenty times in recent months, each time yet another disappointment that I was still broken. In recent weeks I’ve decided to just ride slowly, enjoy the views and do whatever I can and enjoy the fact that I’m making progress and riding my bike. Small steps and all that.
Now that I’m back on my bike more and my sanity is returning. Confronted with the fact that life and health are not certainties I’m reevaluating what’s important and more importantly what’s next now that its clear life’s ticking clock can stop or slow down at any moment. I’m dreaming about the future again and taking steps to use that future rather than waking up angry about work in the night.
I don’t care that I’m now 10kg heavier than I should be, 15kg heavier than my ideal w/kg target for this year, and already 3000km behind my training plan for this year or that my fitness has fallen off the charts. I’m still alive despite looking death in the eyes three times in three weeks in March. I still have 30-40 years to recover, burn off that weight and once again become my own super hero.
The next big adventure will be closer to home sometime in the coming years between Covid-19 and whatever pandemic comes next. Working on a good-bad-worse scenario scale anything is possible from taking part in a long endurance race, a slow cycle tour or stealing her e-bike, a trip like this is a million miles away right now, but its important to think big now and again.
It might take a while though, so be patient 😉
Even though I knew a little of your last year, it’s even more impressive than I could have known when I read this. “Confronted with the fact that life and health are not certainties”, that’s what we keep in mind as well (although I was already aware of this by appreciating good things and good life!)
Compliments again to your writing skills!
Excellent, excellent article Shane. Deep, raw and personal this could very well help those reach the bottom and/or look death in the eyes and let them know there is hope. As I spend so much time in the forests as I can to reduce chances of picking up that dreaded virus, it makes total sense where your exposure came from. Thank you so much for sharing. I’ll be sharing this later in the day on my social media at a time people are more likely to see it in their feeds.
Hauntingly familiar, 33 years in and still one day at a time keeps us going. Live for the good days, endure the rest.
Incredible story, very well written! It’s a tear jerker for sure, as well as encouraging. Your positive attitude and determination will take you where you strive to be. BTW, you already are a “super hero”! And so is missus e-bike! Thank you for sharing.
Hi, M & S!
Gewacht tot de volgende ochtend met lezen. Dat was een goed advies. Bizar wat jullie doormaakten. Hoeveel kan een mens aan? Best wel heel veel, jullie althans. Diep diep respect en dank dat je het hebt neergeschreven. Een schrijvers carrière ligt voor je wat mij betreft!
En nu voorwaarts, leef! Met of zonder fiets; whatever.
Man, wat hebben jullie een hoop voor jullie kiezen gehad! Rauw, intens en persoonlijk omschreven, knap! Erg veel respect hoe jullie je hier doorheen slaan. Erg relativerend ook dat kleine ongemakken of problemen maar zeer betrekkelijk zijn. Het leven is maar kort, leef nu!
Sending you love brother Shane. You popped into my head today for some unknown reason and I remembered how much I loved reading about your trip through Africa many years ago. I did not expect to read this but happy to have done so by the end of it. The missus is clearly strong as hell! I just wanted to say that you’re a great man and have contributed greatly to my own life…peace 🙂
Fucking good work Tjom!!!