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.

Life’s too short

I’ve been finding myself saying this a lot recently. ‘Life’s too short to eat rubbish chocolate.’ ‘Life’s too short to watch that film with sub titles.’ ‘Life is too short to be in a traffic jam on the M62.’ ‘Life’s too short to be in online project management training for two days.’ I feel like I am stuck between two worlds. The world of ‘normality’ where I want to get up, go to work, do the chores and for everyone to treat me as if everything is normal and the world where nothing is normal and all I want to do is experience the most out of life and spend time with my kids passing on all of those little stories that have made me me. I don’t want to be wasting any time on things that I don’t feel are important, but what makes me the oracle on what is important and what isn’t. It’s a really tricky place to be in, not only for me but for those around me.

Maybe that film with subtitles that Mr-Me-Myself-And-Eye loves to watch will be the best thing that I have ever seen…. it’s doubtful but maybe I should give it a chance. Maybe by eating rubbish chocolate (and by this I mean the chocolate that is actually expensive and uses cocoa beans crushed between some sacred stones in the mountains of Peru) I will unlock some deep and meaningful part of my soul that will help me understand the meaning of life. Maybe by being in the never ending queue on the M62, It will give me the chance to learn something new about the motorway that I have never seen before (although having driven on the M62 approximately 100 BILLION times in my lifetime, I’m not sure that there is anything else to learn about it… apart from the mystery that surrounds the M62 farm in the middle… I’ve always wondered if it is noisy inside the house…) Maybe by sitting in online project management training for two days straight questioning my life choices, it is actually giving me the opportunity to understand how to project manage my big challenge next year…?

When my first Oncologist (Doogie Howser) said that the average life expectancy of someone with stage IV Liver metastatic cancer was 12 months, I simply said ‘No.’ I wasn’t going to allow my story to end in a year, I had too much to do and even though I haven’t bought in to the ‘year left to live’ narrative, I am acutely aware that in the eyes of Oncology I am half way through that year and I feel a need to reflect on what have I achieved in that time because I haven’t done anything huge or crazy like taking the kids out of school to travel the world on a camel (although, I guess entering Ironman could be classed as crazy!) So here is my list of my small but lovely achievements over the last 6 months.

I have appreciated more sunrises than I did before, being an early bird I have always tended to see the sun rise but I am super grateful to see them now and welcome in each day. I have revelled in the changing seasons and the incredible light that autumn brings and I am trying to change my mindset about winter (a season that I absolutely do not like) I am embracing the cosiness and warmth that it brings and the cold water dips under moonlight! I have learnt to be ok with my own company and embrace all of the emotions that comes with being on your own and with your own thoughts. I have connected with people and friends more, eaten cake and laughed at stupid jokes and memes. I have been a mum and a partner, arguing with the teenager about too much screen time and leaving her sh** around the place, cuddling up to the smaller one in front of Bake Off worrying that Dylan might be thrown off because his signature dish was pretty rubbish (IYKYK,) preparing for Christmas and getting excited about going ‘extra’ this year (I am even letting the kids get some tinsel for the first time ever!) I’ve planned the house reno with Mr Me-Myself-And-Eye just in case I am not here when we eventually get round to getting it sorted. I’ve spent more time with my mum and dad, really listening to them and their stories, appreciating every moment that I have with them.

So yes, I haven’t done anything life altering or huge but all the things that I have done have real meaning and are making as many memories as huge and expensive trips. I guess for the next 6 months I want to continue to do much of the same…. whilst eating good old fashioned Cadbury’s chocolate and avoiding online project management training….. I mean, life is too short for that…. right?!

What’s not to love about a squash eyeing up a sweet potato?!

Hxx

Focusing on the positives.

I took a little hiatus from writing my blog, there was so many things going on and so many different emotions, I just had to take a step back to centre myself again. As the person that the crappy cancer is happening to, you spend a lot of time navigating and supporting other people through it, which I don’t mind at all, it means that I don’t have to focus on my own sizzle, but there are times when I just need to take a step back and breathe and pay my own feelings some attention. I am the QUEEN of brushing things under the carpet and so I am actually proud of myself for giving myself that time.

I had my mid Chemosaturation scans which showed a slight reduction in the tumours on my liver, although Dr Knows-His-Shit said that it wasn’t as much of a reduction as they would like to see, it is enough to continue with rounds 3 and 4 of the treatment. We are taking this as a win (we were due one) and so we are preparing to head to Southampton just before Christmas (happy Christmas to me!) My-Me-Myself-And-Eye has insisted that he comes with me this time, something about ‘supporting me’ (insert eye roll – just the one though…) but at least it means that I can be a moody horrible person to him and he just has to take it, after all, that is the role of a husband isn’t it?!

Whilst we have been celebrating this small win, there are others that I know that haven’t been as lucky. One incredible woman that I have met through our shared cancer journey had a really good response to her first Chemosat treatments on her liver tumours but unfortunately the Ocular Melanoma mets have spread rapidly and aggressively to basically the rest of her body which means that she can’t carry on with the Chemosat and she has to switch to a rather horrid treatment to try and get the other mets under control. This cancer really is the gift that keeps on giving… I’m gutted for her and I can’t help but feel guilty even though I know that what she is experiencing now will be me at some point.

I’ve also been spending quite a bit of time on my own, outside with my own thoughts, which I have found to be my kind of therapy. I think finding your own way of coping with things is really important. Whilst I am forever grateful for people’s advice and recommendations, I am very much of the mindset that I will find my way through this in a way that feels comfortable for me. We were away in Scotland recently and where we were staying had the most incredible sunrises on one side of us and then phenomenal sunsets on the other side, over the ocean. The absolute joy that it gave me to get up every morning and run or walk out to see the sunrise and then in the afternoon watch the sunset over the sea was life affirming. A simple act that made me happy and grateful to still be here. Whilst I don’t like to think that it might be the last time I get to go to places when I go away, it is definitely is in the back of my mind and so I want to make the most of them when I am there.

Aside from going away and navigating through mid point scans, I did let the cat out of the bag on the old socials that I have entered the Leeds Ironman (or as most of my friends have said IronWOMAN!! – absofuckinglutley!) I know I eluded to a big challenge in my last blog and so Tad Dar! This is it! It’s something that I have always wanted to do but have never been in a position to do it and so when I saw that it was in my home town, I just thought I had to give it a go! Obvs I have dragged a friend into doing it with me (sorry Debs! – I even tried to drag my 64 year old Uncle into it too!) and the incredible support that has flooded in for Debs and I has been overwhelming and has defo made it super exciting (and real…. gulp!) So watch out, I shall now become an Ironman bore and shall provide detailed explanations of ALL of my training in my next blogs (#jokes) but it is nice to have something else to focus on rather than just the cancer (not including the family and work obvs) So if anyone sees a couple of woman in their mid 40’s looking a bit unsteady on their bikes, it’s bound to be Debs and I (#teamcornewall) give us a shoutout please (as long as it’s not rude) and throw us a kitkat or something to keep us going!

Keep looking at those Sunrises my friends.