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.

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.

Stuck in the middle with you.

The famous song by Stealers Wheel describes being stuck in the middle of clowns to the left and jokers to the right and I can’t help but feel that this is very much where my life is right now. On the left (the clown) is normality, life running at 100 miles an hour no mention of cancer or incurable disease and on the right (the absolute joker) is the constant scans, appointments, waiting for results and deep dark fear that everything could crumble in an instant. At any moment, like a pendulum, my life could go either way and if I’m honest I would rather it swung in the direction of the clown. The discombobulation (great word) is real.

My last Chemosaturation treatment was 5 weeks ago and after getting through the drudgery of recovery I have been feeling ok. My bloods have been coming back ok ish, the lighter mornings have lifted my heart and soul and I have started back at work and tentatively started increasing my Iron Man training in the hope of making it to the start line on the 27th July.

My brain and body are desperately trying to carry on with every day life, work, home, kids activities, training etc… and the busier I am, the less room and time I have to think about anything else but there is always this shadow in the back of my head reminding me that it just takes one dodgy scan or one abnormal biopsy result for the house of cards to collapse. There is a never ending list of scans and biopsies and appointments that I have to go to. The most recent one was a real treat as I had a thick needle stuck through my jaw. Why is it that the size of the needle is never proportionate to the amount of pain that is inflicted?! And because I feel that I am being institutionalised by hospitals and appointments, I actively avoid going to see a doctor when anything unrelated to the cancer happens. Casing point was when I came off my bike last weekend. After the absolute fury at the toss pot of a bloke who contributed to me coming off (falling off sideways whilst clipped in and at a junction and landing heavily on my left hand… how embarrassing) I then had 40 miles to ride with my left thumb swelling and throbbing under my gloves. When I removed my gloves at the end, my thumb was twice the size it should have been and in hindsight I probably… maybe… should have listened to my cycling buddies and had it checked out but I just couldn’t bring myself to spend the afternoon (of a glorious spring day) inside a hospital or a minor injuries unit. So instead, I have spent the week complaining about the injury and overusing Ibuprofen gel on my thumb just so everyone knows that I did a bike ride last weekend…

The other thing that I have noticed is that although I have also been feeling ok ish, my tolerance for anything post 7pm is diabolical (tbf, it was pretty poor pre incurable cancer diagnosis, so not much has changed.) I have been to a couple of evening work events this week but as soon as it hits 7pm my false eye automatically starts to scratch, twitch and close which contorts my face into a grimace. A bit like a werewolf transforming during the full moon (without the excessive hair growth) but it happens every night rather than once a month. Those that have been with me at the events must have thought that I was either transforming into a werewolf or that I didn’t like them very much, I can confirm that neither were true and it was actually a pleasure to be out and about meeting people, celebrating community with them and talking about other things rather than the big C.

So on balance, this week, the pendulum has been swinging in favour of the clown. Spring is certainly helping with the lighter mornings, absolutely STUNNING sunrises, getting out on my bike (for the record, I still don’t enjoy) and the joys of having kids who still leave their shit everywhere for me to complain about. Next week might be a different story but we will cross that bridge when we come to it.

A Little Less Conversation

It’s a really weird feeling living with incurable cancer. When first diagnosed, it is such a shock not only to you but to everyone around you. The concept that your life is going to be cut short is hard to get your head around and your friends and family rally around as you break the news to the ones closest to you and then further away. The everyday presence of social media allows you to let your bigger network know the news which I guess means that when the time comes and you do die, the surprise of finding out about your death is lessened as people have followed your story across the many different social platforms that there are and will probably find out instantly that you have died. I often think back to when I was a teenager and 3 of my friends were killed in a horrific car crash. The first that I heard about it was when I heard a news report on the radio as I was in the car travelling back from school and thinking that it was a terrible tragedy, not knowing who was in the car. It wasn’t until several hours later when another friend rang me on my landline that I learnt who was in the car and the overwhelming feeling of sadness that encompassed my whole body. For days and weeks afterwards I bought all the newspapers that had reports on the crash so I could gain an understanding of what had happened to try and get my head around it. We didn’t have Instagram or another online platforms to keep their memories alive or honour them, just our hard copies of pictures, memories from talking to each other about how fabulous they were and the news articles. I kept all of the articles for nearly 28 years and it wasn’t until recently when I came across them again that I felt that I no longer needed to keep them.

I know what I am going through is different but In a macabre way, I do wonder what the difference would be this if was happening 15 – 20 years ago (apart from the fact that I would probably have died much more quickly as there was NO life extending treatment) My friends and networks certainly wouldn’t have the daily reminder of me popping up on their phones talking about the latest treatment that I was having or reminding them that I was trying to train for Ironman (have I mentioned that I am training for an Ironman…) There definitely would not have been news articles written about me (which is a shame as I am hilarious!) or the opportunity to look at my many social media accounts to remind themselves or how bloody hilarious I was 😉 They would have their memories, some grainy photographs and some dodgy video camera footage of me aged 7 performing in the local village hall the Pied Piper with JADA (Junior Arkendale Dramatic Society – I am not being biased but how Wendy, Amy, Jo, Helen and I were not talent spotted from that performance is the biggest travesty of the 20th century) I guess that there would have been more people who would go for a few years not knowing that I had died to only find out from a chance conversation with someone that they bumped into.

The other weird thing that happens after your diagnosis is that life goes on. I know that that sounds obvious and a stupid thing to say but it is true. After the initial state of shock and rallying, life does just crack on and the everyday tasks and ups and downs continue. For your friends and family and for you, albeit for you with a level of anxiety and dread every time another unexplained lump or bump appears and you have to have yet another scan or test to make sure that the cancer hasn’t spread further. I sometimes feel apologetic when I bring up my diagnosis with people, as if I expect them to be bored of talking about it or thinking that they have so much other stuff going on in their lives that they don’t want to talk about it. Subconsciously conversations begin to get less and less the further away from your initial diagnosis you get, not that people forget but it is just that life continues to live. That’s ok. Life is there to live and if there is anything that this whole situation has taught me is that this whole big messy, crazy life is wonderful and there to be explored.

I don’t tend to make new year resolutions but what I have pledged to myself this year is not only to live but to thrive. My 4th round of Chemosaturation is at the beginning of February and whilst this is the end of this particular treatment and we are ever hopeful that it has been doing it’s job, it also feels like it is just the beginning, the beginning of exploring what comes next, what other treatment trials and options there are to push the timeline of doom and the beginning of trying to be able live life to the fullest again, thrive in whatever I do and to see as many sunrises and sunsets as possible.