I AM AN IRONMAN.

Well ‘technically’ I am not, as in, I didn’t actually finish the Ironman on the day, managing the 2.4 mile swim and 56 miles of the bike, BUT the weekend just past, surrounded by the most amazing friends and family I completed the distance. The lost 56 miles on the bike on Saturday and the marathon distance on Sunday. The feeling of love, community and support that came across as nearly 100 of us bounced around the Ironman marathon route on Sunday was overwhelming and to be honest, I am still riding high on the endorphins of the whole weekend.

I think that I need to rewind a bit to talk about how we got to a weekend where people gave their time to help me fulfil one of my dreams.

I’ve spoken about the build up to Ironman not being ideal, my training was inconsistent (with a whopping big trip to Australia thrown into the mix) and the Immunotherapy that I started when I got back from Oz making me feel pretty rotten, coupled with the fact that I was getting increased pain from the pesky liver tumours which made the bike particularly uncomfortable due to the bike position. However, I was determined to make it to the start line and do what I could. This attitude actually made everything about the build up to the Ironman day incredibly exciting and I could thoroughly immerse myself (and my credit card) in the whole Ironman experience. I watched all week as the athlete village sprung up in Roundhay Park and me and my Ironman friend Debs were one of the first people to go through the doors to register and look at all of the exciting branded ‘Ironman’ goodies – They do know how to market that stuff, I mean, who doesn’t need an Ironman cowbell and towel, along with 3 t-shirts and hooded tops…?!

The Saturday before the race, Debs and I racked our bikes and put our transition bags where there were meant to be (and made another pit stop at the merch tent) I had my hair braided and ate as much pasta as I could stomach. Heading to bed, I was super excited and the butterflies in my stomach were dancing all over the place, I just wanted to get to the start line! After approximately 0.005 minutes of sleep, Debs, her friend Rich and I made our way down the eerily quiet streets of Roundhay to the park ready for the start. And WHAT A START IT WAS! The park was packed, as we lined up ready to go into the swim I looked across the lake to thousands of people shouting, screaming and supporting all 2400 athletes. All of us on the swim side were hugging and high fiving, calling good luck to each other whilst whirling our arms around in circles ready to get into the water. If you don’t know, at every Ironman start they play ‘Thunderstruck’ by ACDC, a rousing tune to get everyone hyped and ready. Hearing it boom out over Roundhay lake sent chills down my spine and I couldn’t wipe the grin off my face, this was it, I was starting Ironman Leeds.

The swim was great. Chaotic, scrappy, I was swum over about 4 times and there were a couple of moments where it felt like you were dredging the bottom of the lake because it was so shallow but I loved it. The Roundhay crocodile didn’t even make an appearance (something that is 100% fabricated in my head and definitely doesn’t exist!) and I got out of the water and into transition super pumped to get onto the bike. Sooooo many people were there cheering everyone on, it was wild!

Getting onto the bike was fine, I was looking forward to it despite the rain and I set off. About a mile into the bike was when things started to not be ok. I felt sick and I couldn’t take on any fuel or liquid, my liver pain was there but at that point it was manageable and tbh, the sick feeling was what I was concentrating on more than anything else. Anyone who has taken part in endurance events knows that if you can’t take on any fuel or hydration, there is a point when you can’t continue, you can’t expect your body to function over a 100 miles with no petrol so I knew that I was on borrowed time. At 56 miles in, I had to call it a day. My pain had increased dramatically and being hunched over the bike wasn’t an option any more and I felt incredibly sick. I was gutted to call it at 56 miles but I knew it was the right thing to do. Once I had recovered a bit, it gave me the chance to be at the finish line to watch the incredible Ironman Debs cross the red carpet and finish, a TRUE IRONMAN, I could not have been happier or more proud of her, she is incredible and one of the most amazing and resilient women that I know.

So that was my official Ironman story, I started but didn’t finish. Proud of how far I got but with a sense of unfinished business

After Ironman, things also started to get a bit tricky with the old cancer. I was undergoing tests to see if if I was eligible to start the Ocule 1 trial (a phase 2 trial on a chemo drug called Roginolisib) I had a liver biopsy which ended in a short stay in hospital due to some slight complications from it and loads more tests. What I thought was a routine appointment with my consultant was actually an appointment where he told me that although I was undergoing all of the screening for the trial drug, he didn’t think that I would be accepted onto the trial due to the size of one of my tumours in particular and the speed at which the tumours were growing. If I wasn’t accepted onto the trial then there was very little else that they could do and there would be a tipping point where my liver wouldn’t be able to function due to the tumours and at that point I would have probably a matter of months left to live… talk about a vibe killer.

It was all a bit much to take in, I did know that things were starting to feel worse as I was in a lot more pain but I always had a bit of hope and at that point I felt that it was all slipping away. Cancer emotions are a massive rollercoaster, one minute you are on a high because you toed the start line of Ironman, living with stage 4 cancer and the next you are floored by the thought that you might not have very long left to live and then all of a sudden you are on a high again because you are accepted onto the trial and you are scrambling around to get yourself to Liverpool to start the trial drug the day after you are told that you able to have it!

In amongst all of this, a team of amazing women, who knew that I wanted to complete what I started with Ironman, were plotting and putting together a weekend of cycling and walking to make sure that I could finish, despite none of us actually knowing of I would be able to do it. The trial drug makes me feel very very sick and the largest tumour is now protruding from my abdomen making me look 4 months pregnant which makes cycling virtually impossible and running incredibly painful. Nevertheless, they all just cracked on, putting together the most perfect weekend, sorting out an electric bike to make the cycling easier for me, getting Ironman branded banners and the ACTUAL FIRST TIMER IRONMAN BELL for me to ring at the finish line, a medal and reaching out to 100’s of people from all parts of my life to come and join in or send messages of support. Friends and family travelled from around the country to join in or just hang out at Roundhay Park to support. Volunteers from the Ironman event recreated their support stations on the run route so everyone could refuel and hydrate, strangers were leaning out of their windows, clapping and cheering everyone. I can’t tell you how many times I cried when people surprised me by turning up to say hi and show their support (Sue Bramham – sorry I snotted on your top!) One of the things that I loved most of all was when I was looking around at everyone walking on the Sunday and I saw everyone chatting and laughing and making new connections and sharing stories. All of the amazing people from my life over so many years were all now connected from doing a crazy but amazing thing on a sunny Sunday in Roundhay. The pain and sickness paled into insignificance as my heart filled up with joy to see everyone. Crossing the finish line was one of the best experiences of my entire life and I am incredible lucky and grateful to have such an amazing community around me. I know that whatever happens over the next few months, my kids and family are going to be ok because of our wonderful friends and family.

Now, what do we think the next challenge might be… (sorry mum!)

Hx

Hope and Ironman

As most people do, I often start my emails with ‘I hope you are well.’ Although I know that no one is going to come back to me baring their soul about everything that is happening with their lives, I genuinely do hope that everything is ok and they are coping with whatever life has to throw at them.

I haven’t written for a while, one reason is that life became super busy again with a cheeky trip to Australia to visit my brother, the impending Ironman and training as much as I could for it and because for a while, I think that I was losing a bit of hope and I didn’t really know how to deal with it…it was almost like, if I wrote it all down it would become too real.

When I started with the Chemosaturation last August, the hope was that it was going to blast all the tumours, send them to sleep if you like, for a period of time so I could forget that I had incurable cancer. I went further than hoping, I went all in, I fully expected an absolute positive result. Aside from the relatively short side effects from the treatment and the awful anaemia which I seemed to get a handle on with the help of iron and blood transfusions, I was able to physically carry on with everything and get back to relative normality and most importantly, Ironman training! So as my final scans loomed after my last treatment, I felt confident and I had started to imagine life without constantly thinking about the cancer spreading and dying imminently. We had purposely planned an adventure to Oz with my parents to spend time with my brother and his family just after my scan results as a celebration and to almost act as a new beginning as it had been quite a stressful 9 or so months.

So I was knocked for six when, in my scan consultation with Dr Knows -His-Shit, he announced that there was good news and bad news. The good news was that the original tumours had responded to the treatment, the bad news was that there was evidence of a new main lesion and several smaller ones that appeared to have a resistance to the treatment. This is NOT what was in my plan but in true ‘Hannah’ style, I decided to crack on with our trip to Australia and hope that we would have other options when we got back. Australia was everything that we wanted it to be. Time as a family, time with my brother and parents and time to fill the kids with the sense of adventure that I had when I was younger. I showed them the places that I went when I went backpacking, we visited the rainforest, the Barrier Reef, the Great Ocean Road and saw some of the most beautiful sunrises and sunsets that I had ever seen. A quick stop in Singapore on the way home and before we knew it the month was over and we were back facing the reality.

So what is the reality? The outlook and options are certainly looking slimmer. I had to start a course of Immunotherapy literally the day after we got back from Oz, to be eligible for a potential trial but it was obvious that the main tumour was growing rapidly and my symptoms have started to get more intense and constant. I’m not quite as sunny first thing in a morning (much to Mr Me-Myself-And-Eyes delight!) and I have constant pain, BUT as I keep saying to the kids, we have to find joy in every single day, even on the worst days – on those days where grief and pain overwhelm, we must always find a pocket of joy.

Aussie Sunset, a true pocket of joy x
Family – My absolute joy x
Not a shabby morning view x

Above everything else, I have an IRONMAN start line to get to. The time has gone so fast and I know that my training has been far from ideal but when I started the journey to Ironman my hope always was just to make the start line and now my hope is about to come true as it is THIS SUNDAY! I am going to be on the start line, soaking up absolutely everything and enjoying whatever the day brings, whether that is finishing or not. The excitement in Leeds is Palpable (even from those people complaining about the road closures!) and I am beyond proud to have raised nearly £15,000 for Ocular Melanoma UK – the only charity in the UK that supports those with Uveal melanoma and the devastating consequences.

So there we are, a mixture of big emotions at the moment, full of hope of getting through the weekend, of being able to get on the trial and hoping to live long enough to enjoy more of this wonderful and crazy life.

Hx