Sunday, 9 July 2017

What I learned about cancer while doing an Ironman

I started training for Ironman UK pretty much as soon as I found out my friend Helen had cancer. The two are linked - stupidly, because it was a knee jerk emotional reaction in the helplessness of her news, I thought doing something heroic and challenging might lessen her burden. I felt like I should carpe diem in her place. I don't know what or why really, but I am sure someone who knows psychology could tell me.

Anyway, as I swam-biked-ran, she undertook her own journey which is documented on her blog.

Here are some things I learned about cancer during her journey and mine. (Disclaimer: This isn't in any way supposed to be a comparison of cancer versus triathlon. But I find we are largely all very bad at talking about life, death, mortality, and the love of friendship, so I figured I would use the framework of triathlon to explore this.)

The swim: cold chemo
So I learned lots of things I didn't know. Little practical things on everything from hairloss to how chemo makes bits of you feel. I saw that Helen has to wear these cold mitts on her hands and feet (like oven gloves with ice packs inside) for some of her chemo sessions. It was awful seeing the discomfort she was in wearing them. I'd like to say this made me braver on my cold water swim that April but it didn't. I flinched, squealed and withdrew my hands. I don't know how she kept them in there but then she has done a New Year's Day swim in the Quays so she is definitely of harder stuff.

Brave and inspirational:
This leads me onto being brave and inspirational. I get lots of lovely messages from friends saying I am inspirational. I figure this is because deep down they would like to try a triathlon, tackle an ironman or simply move out of their comfort zone. I get that. Helen is often called Brave and Inspirational. We, her cynical friends, had to confront her about this. Is she brave? She's got cancer. This means she has to be cut up, poked at, scanned, injected and so on. She doesn't really get much say in it. We should be careful in that saying someone with cancer is brave, we deny them the space to be afraid. If Helen went into every medical appointment crying and fretting she is no less a person and I know we all know that, but maybe let's not give people with cancer another cross to bear?

The bike: it will be lonely and you will cry
I can only imagine there are times when Helen would cry (like I do at 85 miles) or shout (like we both do at headwinds). Sometimes you cry when you don't know why, and I know Helen has had those days too. I wish I was there for her all those times she may have cried, (mind you, if it's anything like me on the bike, perhaps it's best left alone as I may cry more?!) Sometimes you need to howl at the wind and it doesn't matter who hears you. I hope Helen gets some wind howling done.

The run: the move into the unknown. 
So they say that the marathon after the bike is like no other run you've done. This makes sense as your legs don't feel your own after 112 miles. For Helen, the future is an unknown, and I hear her frustration or hesitation on making plans because she doesn't know what her treatment schedule might be. But sometimes I hear her silence because I feel like she's thinking "I don't know where I will be." How do you treat someone as the same old same old with that elephant always being in the room. Our mutual friend Kat expressed this on Helen's first birthday with cancer.

You can run and ride with cancer, on chemo. 
This follows on from being brave and inspirational. Helen always ran, and always rode. She had parkrun double figures before her diagnosis. She was an ace cyclist for many moons. That she did this when she had cancer was because she wants to be who she has always been. I feel bad about this because when she ran the Great Manchester Run, we milked the PR for all it was worth, obviously for Pegasus RDA. But she was just being Helen and I am sorry we had to make it so much about cancer. But you got some awesome donations! For this reason, I can understand why she was so frustrated cycling to Edinburgh. She wasn't some inspiring invalid - she is Helen and she wanted to cycle like Helen.

No one can understand what you're going through
I say the above like I am reading Helen's mind at times. Of course I can't. Even if I lived and breathed her every moment, you only know what is inside someone's head when they have cancer if you can crawl inside their head. I don't think we have an app for that yet. In the way that many of my friends don't understand Ironman: why are you crying, you paid for this; you'll make the cut off; you'll smash it; can't you have one night off; why do you go to bed so early; but you can't train all the time? I can never understand what she is going through. And in the same way my friends try and say the right things to my addled, exhausted, hangry soul, I try and say the right things to Helen and indeed my other friends (for there are too many) who have cancer. I have foot in mouth syndrome so bad that someone should call Defra. Let the forgiveness flow as we all come from good places.

It doesn't make any difference:
The biggest lesson I have had to learn is the hardest. It doesn't make any difference, you know. If I have a bad day on the bike or set a PB at Ironman. If I don't make the cut off, if I win the whole freaking event, it doesn't change her diagnosis. It doesn't ease her suffering one bit. It doesn't give her more days or more vitality. It doesn't make us understand each other any more than without. So it's official, there's no cure for cancer. And my heart breaks for it.

Find out more about how I will be fundraising to make this event useful to Helen.

Wednesday, 2 July 2014

Nuptials: in sickness and in health

I got married recently. It was a quiet thing. For both The Beardy Guy and I, we had been there before and needed to get married, not have a wedding. We wanted to be true to our values and morals and new fund eco principles too! There were no old friends, no rings, no flowers, no readings, no family. Just a cyclist and a runner as witnesses and 15 minutes of very intense and solemn legal stuff. In which they may have said those words "in sickness and in health, till death do us part". We probably don't think about those words when we get married. Who wants to think about death or sickness on such a happy day? I know my primary school friend Dion did not.

And here he is now living what those words mean. Please read these words and consider a donation. What can £10 or $10 buy as a wedding present? What if everyone who read this donated that amount as a a small wedding present - collectively you have bought a chance to continue someone's life. This isn't like running a marathon, passing on the funds to a charity, knowing somewhere down the line your money goes to a bigger pot that eventually gets to a scientist. The science is done, the treatment is ready and Jo is a real live person who I know will thank you. We just need to get Jo to Moscow. What better present could there be for everyone?

The Story of Jo and Dion…by Dion Russell. 
“I, Dion Russell, take you, Jodi Wyatt as my lawfully wedded wife, to love and to cherish, in sickness and in health, till death do us part.” I smiled at her through her veil.

“You may now kiss your bride, Mr Russell,” the Pastor beckoned.

My heart raced as I gently unveiled my bride’s face. She looked so beautiful. I gently bent over and placed a soft kiss on her lips. Jodi in turn embraced me tightly with tears of joy streaming down her face.

“I present to you Mr and Mrs Russell!” the Pastor exclaimed excitedly.

The church cheered.

1 year later…...

Looking back at our wedding day, I thought I was the luckiest guy in the world. I had a beautiful wife, a job that I enjoyed, hopes and dreams. I knew nothing of the condition called Multiple Sclerosis (“MS”). I didn’t need to. I knew nothing of the treatment methods, the excruciatingly long stays in hospitals and the countless specialists and tests. I definitely didn’t understand daily fatigue. I probably still don’t.

What I did understand is that things were now different. With the aid of hindsight, it became obvious that Jo had always had MS, but back then, in the early stages of the disease, it wasn’t something we noticed. What I will say is that Jodi now had a name for her sickness and most times it was mentioned with the term “incurable” before it.

“The doctor thinks I have Multiple Sclerosis,” Jodi stammered down the phone line to me. 

“You have multiples of what?” I stupidly replied. “I’m sure we will be alright, I will fix this”, I confidently said.

“It’s a disease of the brain and spine. There is no cure. Most people end up in a wheel chair, like vegetables”, Jo said.

Now I don’t know if it’s a Dion thing or a guy thing in general, but I know that my job has always been to “Fix” things. If the bathroom tap or toilet seat were broken, I’d fix it. If an unexpected expense came in that we needed money for urgently, I fixed it. If the car tyre was flat, I’d fix it. That was firmly part of my job description. Lawns, gardens, spider eradication, bin duty and general fix-it guy.

I can still to this day remember that horrible feeling I had in the pit of my stomach when I heard those words, “there is no cure”. 

My wife was broken and I couldn’t fix her. I was defeated. 

In the years that followed her diagnosis, Jodi endured spinal taps (lumbar punctures), countless needles, tests, drugs, chemotherapy and horrendous side effects. She tolerated muscle weakness, fatigue, blindness, spasticity, tremors and depression. I think one of the worst things she had to endure was that constant thought, waking up every day wondering if this was going to be the day she had a relapse that rendered her blind or incapable of walking. 

The entire time I sat back, helpless, unable to do any more than offer worthless encouragement and help to pay the thousands of dollars a month for the medication.

Then one day in early 2014 while going about my normal work, my phone started beeping and buzzing in a way that was unusual. 

I was never this popular. 

Countless messages from friends and family saying, “are you watching 60 minutes?” “Have you seen there is a cure for MS now?” and then an excited call from Jodi. “They can stop the progression of my MS, but it is done in Moscow and its expensive”. 

I didn’t even ask how expensive. I just said “book it in, I’ll get you there”.

Looking back at the enormity of facing a $100,000+ treatment, I probably bit off more than I could chew. In the following week that thought started to take hold. I remember telling Jo, "we should probably not tell the kids yet”. 

She was smart, she told them straight away so I couldn’t back out of my commitment even if I wanted to. One day, after a bad day at school, Abbey made sure I was going to do my job. “You said your job is to protect us. That you wouldn’t let anything happen to your girls…SO FIX MUM!” 

Looking back at our wedding day, I thought I was the luckiest guy in the world. I had a beautiful wife, a job that I enjoyed, hopes and dreams. I knew nothing of the condition Multiple Sclerosis. 

Here I am now, still the luckiest guy in the world. I still have a beautiful wife and a job that I enjoy. I now have two gorgeous daughters who truly are the apple of my eye. My hopes and dreams have changed. I now know a whole lot about Multiple Sclerosis. 

I can’t wait for the day when Jo can wake up like you and I do, wondering whether she should have cereal or toast, rather than worrying about wheel chairs and walking sticks. 

I know that with the help of good people, those of you who stuck with me to the end of this verbose letter, I will finally be able to Fix Jo in Moscow.

Wednesday, 9 April 2014

A post from Dion

I'm reposting this update from my old school friend Dion as I want as many people as possible to read it. It's my reason to swim, bike and run. And support.

"People regularly ask me what happens when Jodi is sick? I.e. What symptoms occur?
 
MS is a strange disease. It effects its victims in different ways. Jo deals with the daily aches, pains, tingles, forgetfulness and fatigue well, in fact, people are often surprised when they find out she has MS. If I had a dollar for every time someone said, “Oh really? She looks fine?”, I wouldn’t need to host a GoFundMe page. Maybe that’s the problem, maybe she just doesn’t look sick enough?

At times when Jodi is really ill, she hides away from society, normally too tired to leave our bed, let alone host friends. However, on her recent month long stay in hospital, many visitors got to witness the Jodi that Rachel, Abbey and I often see. The zombie-esque Jodi, high on a cocktail of drugs that are required to quell her MS symptoms, minimise pain and assist her to sleep to get through the next day.

This disorder has introduced me to a world of things I never expected to deal with in this life. Constant shopping to replace the broken plates & glasses, smashed due to the loss of coordination. Fighting with the people I like to call the “ACROD Police”. Those who make visual judgements on whether Jodi is really entitled to an ACROD bay at the supermarket (despite having one displayed) and want to fight me when I tell them what I think of their visual appearance in my own special way. The role of “bathroom door counsellor”. Yep, thats right, I have had times (especially in the early days) where I have had to stand outside the bathroom door for hours, listening to Jodi cry as she tries to build up the courage to give herself that daily injection. Hopelessly trying to convey words of advice and encouragement for her to “just do it quickly”, “it won’t hurt” or to, “think of something else”. All those tidbits of encouragement that I never believed, necessary for her to carry out something that I would struggle with doing myself. The role of “toe holder”. See, Jodi is claustrophobic and terrified of MRI’s. Unfortunately that is a common way for neurologists to monitor the progression of the disease. So against the radiologists better advice I would put on my radiation fall out jacket and hold onto Jodi’s toe, the only part of her body sticking out of the machine. Oh, and then there were the lumber punctures. I shudder to even recall the thoughts.

Still to this day I hear stories of the “funny” things Jodi did or said in hospital. The crazy texts received from a bored patient who went in to hospital suffering the MS symptom of temporary blindness. It is the not so funny things that seem to stick in my mind. The times I have sat up with the kids whilst they cried through the night because, even though they know Mum was "drugged up", they never thought she wouldn’t recognise them. The manic screaming from Jodi to “get her off of me” and “who is that” that reduced Abbey to tears for days. The scared sensation of watching your wife unable to feed herself. That helpless feeling of watching your wife admit defeat at times when she is too weak to even pretend to be strong. Probably the one thing that I found hardest of all was trying to settle Abbey down after she came home from school one day. One kid had asked if Abbeys mum was better. Abbey said, "no, she’s still very sick in hospital". The young boy said, “she will probably die. My grand dad died and he was only in hospital for 2 weeks”. That part shook her up. His grand dad died after 2 weeks in hospital and Mum was already up to 3 weeks? I explained that different people go to hospital for different reasons etc, not all die. She bought it. But what happened next still replays loudly in my brain in a way I can’t seem to forget. Abbey, placid, tiny, 6 year old Abbey, called me out. She looked at me with a face of pure hatred and said, “You said your job is to protect us, that you wouldn’t let anything happen to your girls, SO FIX MUM!” in a scream that still shakes me up. So that is how this page got the title of “Fix Jo In Moscow”. I told Abbey I would FIX it and FIX it is what Im going to do!

I can post this picture because I'm currently 4000km’s from home, just outside of Jodi’s reach. I don’t post it to embarrass her but more so to show those people who haven’t seen Jodi during the hard times, just what they are missing out on. This is the reality of MS. It needs to be FIXED! "




You can support Jodi by crowdfunding for her treatment at  http://www.gofundme.com/7jygyg

Saturday, 22 March 2014

Racing for a reason

It has been quiet on the blogging and twitter front as Beardy Guy and myself wrestled with the concept of events we had entered, an obligation to train, and our desire to actually live a less disciplined sporting life. While I am still heavily involved in Freedom from Torture, the fundraising activities needed to take a rest for the sake of my amazing donors if nothing else. I felt like an athlete without a cause. Swimathon was the first activity in my calendar and while I attacked swim sets and coaching with gusto there came a point where the whole thing felt a bit pointless. I felt like I had been here, and done this. Yes, while I was not gifted with sporting talent, I was endowed with ridiculous stubborness, so enter me in something and I will do it, even if I don't quite complete the training. So what was there to prove? 

Enter Jodi. 

Jodi is the wife of a primary school friend. Yes primary school, where I wore wrapround netball skirts and sneakers with ankle socks - all held together by velcro. Where you get picked on (a lot) and have a crush on boys with freckles that are shorter than you. I didn't keep in touch with many people from primary school because I moved out of the area, didn't go to the state high school and most of them turned into rednecks that call you names like towel head.  

I saw Jodi in the facebook photos of my school mate Dion. Smiling against Perth's sunny skies, in the warm embrace of family. What I didn't know was that that Jodi had MS. It knocked me for six to know that this bubbly family, full of domestic challenges (Dion often works in Perth's nearest city, ie in Indonesia) had this disease to deal with as well. 

MS is an autoimmune disease that attacks the central nervous system. As a result, Jodi battles severe pain, fatigue, loss of balance, eye discomfort, hearing & vision loss, muscle spasms, depression and memory loss. The treatment she hopes will prolong her quality of life is not available in Australia and the family have made the decision to have the treatment in Russia. They are crowdfunding the cost of this as they can't bear it alone. At present, $98,000 stands between here and her recovery. 

There are people who crowd fund to make movies, there are people who sponsor a child they will never meet, people who put coins in collection boxes without thinking. There are people who put "pay it forward" memes on their facebook page. Now is the time to get a little closer to a cause, and help give a family back its mother and wife. 

I'm dedicating my sporting events this year to crowdfunding for Jodi. This will be a 5km pool swim, a 3.8k open water race, a middle distance triathlon (1.2 mile swim, 56 miles ride, 13.1 mile run) and a century ride (100 miles). In return I'd love you to come with me on the journey. I can't tell you how many people write to me and tell me they don't have money - and that's ok (though I urge you to consider that if we all donated a pint or glass of wine we could raise $1000s). But if you've made it this far down the page you are a person of tolerance, compassion and intelligence. Share some fundraising ideas with me: cake stalls, those parties where people come to your house and buy stuff, lamington drives (do they still have those in Australia!?), quiz nights. You may even feel inspired to organise one yourself... Or share this post and follow Jodi's news. Sign a petition for her treatment to be available in Australia. Learn more about the disease. Why? Why should you, why should this matter? It's an awful thing to consider, but if one day it came to my awareness that it was you needing help, I would swim, bike, run and fundraise for you. 

With love
Rowena

Support Jodi at http://www.gofundme.com/7jygyg

Monday, 12 August 2013

Life and Death after Half Ironman

This is a belated blog. I wrote many versions of it riding on buses, walking to work, swimming laps etc. It was all about life after half ironman. The more I didn't write it, the more it changed. So here is the journey of this blog post, triathlon related and not.

I was never a natural athlete, so completing any one of the single disciplines of a half ironman was never a given - not even the run. As a result, training consumed my life. The fear of failure was a big driver for this, but also, so was the amount of change in my life. Living Up North as Ms Beardy Gal and step mum, unemployment, a change in work, country living - everything was different and triathlon seemed the one thing that was constant.

The race itself was great. Seven hours of pure fun. I'm glad I am slow - if I was fast I would have had less hours of fun. It was so much fun that I came home and put every 70.3 race in the UK in my calendar. I knew I could do it, I knew I could do it faster, or I could do it with less "fear of god" training. If the first half Iron was a leap of faith, then the second and the next, and the next was a redefining of myself. I was not a One Challenge Pony, I really felt like I loved middle distance triathlon. I returned to training with zeal, especially as Jon had his eye on lots of races that would take him away from home. I needed that constant again so I didn't feel lost at sea.

Then there was Freaky Friday. On Freaky Friday, I learned my dad's wife had cancer. I learned when she was already in surgery as my poor dad had also learned in that same period that his mother had dementia, and had threatened to harm herself and my grand dad. She had been sectioned. It was a lot to take in from a distant phone call and series of text messages. I set about the long distance telethon that is ringing one part of the family to the next to find out what is really going on. If you know a little about me in real life, you'll know that making these phone calls can often be the first contact I've had with family for years at worst, months at best. After one of these 1am calls I sat typing to my mum, musing how these sorts of things make you question your life's priorities, question how much time you give your family, amongst other Big Thoughts. It hit a note with my mother, and when I woke after a few hours sleep, I read an email from her, an outpouring of things I needed to know before it was too late. It's been great to have that honesty and intimacy with her, so fresh after her great support role at the race in Mallorca. But of course revelations like that knock you for six. I spent most of the week reeling with the Big Thoughts in my head. They are louder and bigger when you are in the countryside away from friends and family, I am sure.

On Sunday I attempted to cycle from Mossley to Liverpool. I got lost in Salford for about an hour. While this was happening, I realised that I needed to address some of the things that could make me more happy. I was missing the spontaneity of life, and the finances to do things - be it visit my friends in London or further afield, go to dinner, make a load of long distance phone calls and so on. Saving for a house, while taking part in a very expensive sport was taking a lot of resources - not just time and energy. I decided not to do the Middle Distance triatlon I had entered.

At the same time, as I was pedalling bored towards Merseyside, my grandmother died. I take some comfort that it was quick, that she didn't spend years wondering who the people were around her, that she was at least cleared from the mental health ward. I take little comfort that my granddad was ill-prepared and that my family did not have time to rally itself, that she died alone.

It would be easy for me tomorrow to wake up and choose some gruelling swim-set, disappear in the pool and then do a strength and conditioning session at lunch. That's what Tuesdays are for, right? But I hope that along with the realisation that I am a triathlete (and that won't change no matter what I do and don't do) I am also part of a strange group of disparate people called family, a clan of blood and tree-lines that don't speak much but have common links. And that if I can put as much time and effort into them as I do my attempts at sport, then maybe the next family member won't die by surprise or won't die alone. At the very least, I hope I'm not cycling the estates of Salford when it happens.

Monday, 1 July 2013

Hear for yourself: where your donation went

I've not forgotten how generous you all were with donations for Freedom from Torture North West so I really wanted you to hear first hand about the work they have done and you have funded. 

This interview is with Jude Boyles who greeted me with enormous warmth on 21 May when I returned to the UK to Freedom from Torture's Manchester offices to report on how the half ironman went, and how your support had helped me. 



"It's hard to imagine what someone will look like when they smile... so when you start to see those tiny chinks... like when someone shakes your hand and says thank you when they have never looked you in the eye for months, those are the things you start to celebrate."

You can still support Freedom from Torture here at www.justgiving.com/halfirongirl