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!)

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.

Superstitions and a change in routine.

I grew up in a family where superstitions were a thing. Saluting to a single magpie, no new shoes on the kitchen table, never passing anyone on the stairs, never accepting money when you give anyone a stamp, never buying a kitchen knife for anyone (not 100% sure why you would want to do that one but anyway) and NEVER must you EVER say ‘Candyman’ in front of a mirror 3 times…The list is actually endless. As I have gotten older not only do these childhood superstitions still take up a fair amount of space in my tiny brain but I have I have also developed my own personal superstitions and routines for different occasions. If I was a psychologist, I could delve into the fact that I use these as a form of control but I’m just going to go with the fact that I just like them and they make me feel better 🙂

During my Chemosaturation treatments (and interestingly where I don’t have any control over what my pesky liver mets are doing) I have created some additional routines and superstitions that have shaped my experience for each round. So you can imagine my face and anxiety levels when ‘what I like to do’ took a curve ball heading into round 4…

It started before I had even left the house to go to Southampton when I couldn’t find my ‘lucky slippers.’ They are the most disgusting things that you have ever seen but they have a delightful rainbow across the front of them and I had stolen them off of the teenager before round 1. The theatre team at the hospital even recognised them and we always had a bit of a convo about slippers before my procedure. The suggestion from Mr-Me-Myself-And-Eye to ‘just take another pair’ wasn’t going to cut it. Panicking that I had packed them away along with half of the house whilst we were having some building work done, I tore the house apart looking for them only to eventually find them tucked away in one of the cat beds. Phew, crisis 1 averted!

So with the confidence of a mature cheddar a week past its best before date, we began the long trundle down to Southampton. We were on the M1 when the second curve ball hit. There is a specific service station that we usually stop at to stock up on over priced M&S goodies and an even more overpriced Pret sandwich but it seemed that the universe had a different idea this time. I say universe, but what I actually mean is my 44 year old weak bladder that had nailed 2 litres of water prior to setting off so she didn’t appear dehydrated on arrival at the hospital had a different idea. Not even 1/2 hr into the journey (which is even before you get to Sheffield – and NO ONE stops before Sheffield when travelling down south from Leeds) and I/my bladder had to stop. Faced with a service station that had a Waitrose instead of an M&S was quite frankly discombobulating and lets face it, they do not have anything that compares to a fresh Percy Pig…It also meant that we had to factor in a second stop on the journey as it was too far to go from stop one all the way through to Southampton. This meant that we had to find a stop on the A34… a road that is not widely known for it’s ‘advanced’ facilities… #bladdergate meant that I couldn’t be picky and so the second stop was at a deserted garage and had the feeling of one of those petrol stations in a Marvel film that is deserted before some out of this world baddy slams into the forecourt with Thor following close behind and then there is a close up of the petrol station attendant inside the building looking on open mouthed…Shaking off the unexpected changes to our journey, we continue onwards to Southampton with the sun shining down and temperatures hitting a balmy 9 degrees.

Arriving at the hospital, everything was as it should be (at the posh hospital, you check in at reception and then someone comes to show you to your room) but that is where my anxiety over my Chemosat superstitions and routine became heightened. Firstly, I was in a room in ward 2 rather than ward 1 for the night, not only was this on the other side of the hospital but it also meant that instead of having the sunrise on a morning, I got the sunset on the afternoon. It was a beautiful sunset but it wasn’t what usually happened and I just couldn’t settle. Luckily, I only had to stay there for one night before I moved to ward 1, but instead of being in one of the rooms near the nurses station, room 1, 2 or 4 as I had been before, I was way down the corridor in room 10! I mean how was I going to hear about all the gossip from the nurses if I was no where near them and I couldn’t keep my room door slightly open to hear them?! Not only this but the cannula that usually goes in the back of my hand to give me a hearty dose of Iron (have I mentioned that I have excellent veins for needles and cannulas) ended up in my elbow crease, giving me the fear that whenever I was going to bend my arm the cannula was going to pop through the back of my arm (Blugh!)

As soon as I woke up on the morning of my procedure, I had a feeling that something was going to be different. I was first on the list which was as normal and I knew that it meant that despite having to be in recovery for a long time due to my inability to come round from a general anaesthetic very well and the impending doom of the lines being taken out of my neck and groin, I would be back up in my room in time to snooze in front of The Chase on ITV sipping tea through a straw.

Usually when I head down to theatre (arse firmly covered by a scratchy dressing gown over the theatre gown) we go down the corridor and take the lift down to directly outside the Cath Lab (theatre) which is where the chemosat procedure takes place. I know the drill and so as my nurse was walking with me down the corridor, I automatically started to go towards the lift until my lovely nurse said, “I quite fancy getting some more steps in, shall we take the stairs…?” Now I am someone who LOVES to get their steps in, nothing fills me with more joy than when my watch tells me that I have achieved my step count before 8am and then comparing my total daily steps with Mr-Me-Myself-And-Eye on an evening and always absolutely smashing his. So now I was in a quandary, do I stick to my pre procedure routine of taking the lift, especially when a lot of my rituals had changed up until this point making me feel very out of sorts, or do I give in to my ultra competitive side of getting my steps in (and a few cheeky flights of stairs) and live with the unsettling feeling of things not being quite right…?

You don’t have to be a rocket scientist to know which one I chose… it was the steps and the stairs obvs (but annoyingly I didn’t have my watch on to actually record the steps – eye roll, just the one though) and although my head was screaming at me that this was all wrong and it could mean a potential disaster when I was in theatre (not that I catastrophise much…) in the end, my competitive side won and my overwhelming desire to beat Mr Me-Myself-And-Eye’s step count on as many occasions as possible.

So what lesson have I learnt about superstitions and routines? That although I do love a routine and have possibly some form of underlying trauma from a superstitious childhood… it is ok to break out of routine on occasion and if I do, my world won’t collapse and bad things won’t happen…. Now where is that ladder for me to walk under….

Did I Ever Mention…

…that I used to work in TV… (I can see the eye rolls of many of my current and ex colleagues as I launch into this…)

I started at Yorkshire TV on a work placement from University and immediately fell in love with everything about it. The early mornings, the working outside, the fact I could wear jeans to work, the creativity but mostly the people. Everyone was brilliant, even the directors and artists that had a reputation of being a bit difficult and quirky, I always seemed to get along with. After the work placement had ended I was offered a contract which began as soon as I left Uni, which, looking back, was incredibly fortunate, I’m not sure how many of my friends fell directly into work after we had finished our degree.

My very first job was on the ITV hit Emmerdale as an Assistant Stage Manager, basically being a prompt for the artists, sitting with them as they went through lines, sometimes being involved if they wanted to change lines but generally being a support system to them. One of my early memories was the great storm that killed the much beloved Trisha as the Woolpack fell on her. There were huge wind and rain machines that were turned on when we were recording and it felt like we did about 50 million night shoots (which were always fun!) One time, I had to be placed discreetly in the rubble near to where Tisha was buried and listen to the dialogue as Marlon realised that she wasn’t going to make it, making note of any lines that they changed during each take. Needless to say, the waterproof that I was wearing was inadequate against the wind and rain machines and I remember getting soaked to the skin and freezing – but exhilarated at the fact that this was my actual job! I bloody loved Mark Charnock and Sheree Murphy, we had so much fun and properly belly laughed with the rest of the cast and crew throughout the whole shoot. The First Assistant Director on this shoot was a gentle giant called Andy who spent a lot of time shouting ‘We’re losing the light!’ as we fought against the setting sun to get the daylight shots in before the ‘moon’ was hoisted up on a 30 meter Cherry Picker for the night shoot.

I soon learnt how important tea breaks were and if the runners hadn’t sorted the hot water or the biscuits out in time, there would be a potential mutiny, especially from the Sparks and Grips.

Another memorable moment at Emmerdale was when I stood in as a ‘stunt double’ for Adele Silver. I had moved into the props department at this point and was responsible for all of the props for all of the scenes that we were recording in the filming block. This ranged from arranging sheep to run through the Emmerdale Village (not an actual village but a set built specifically for the show in Harewood in Leeds) to making sure that the artists had the drinks that the director had asked for for a particular scene. I also had to watch every shot that was recorded to make sure that the set looked as it should and we weren’t shooting ‘off the set’ – meaning that the shot missed the edge of the set and caught a glimpse of the lighting rig above etc… or there were any scripts or plastic cups on the set left over from tea break. On one particular day, for some reason (I have no idea why), the stunt double hadn’t been booked to drive ‘Kelly’s’ TVR into the village at speed. As I was responsible for the cars on set and because we didn’t have enough time to reshoot the shot, I was put forward to drive the car into the village (Remember it was a different time back then – this certainly wouldn’t happen these days!) I must have spent about an hour in make up recreating the look of Kelly Hope with a long wig on and huge eyelashes (kudos to Claire for her patience with trying to make me look a tiny bit like the character!) I could only squeeze my top half into her dress, there was no way it was going to fit over my arse and so I had my baggy dirty jeans on the bottom and then the costume of a very glamorous strappy dress on the top half – I’m sure it must have looked like a sausage squeezed in! We rehearsed and rehearsed the scene with me razzing the TVR over the small bridge and into the village. It wasn’t an easy drive either, the car was so low it was difficult to see over the bonnet when a was speeding over the hill on the bridge, but it was great great fun to do (I think I missed my calling in life to be a stunt double!) There were other many happy moments during my time there when I was called on to be an extra, ‘villager walking through the village with dog’ was a classic as was ‘pregnant woman in hospital bed’ when I was 8 months pregnant with my first baby.

It was when I was on A Touch of Frost as a Stand By Art Director that I think the MOST embarrassing thing happened to me. I was going through a breakup with my boyfriend (who also worked in TV) It was a messy break up (we are friends now though!) and I was struggling to keep it all together as we navigated selling our house, shared custody of the dog and working incredibly long hours on the show.

One of my tasks was to create all of the police paperwork that David Jason’s character Jack Frost had to sift through as he was piecing together the complex case that he was working on. Not really thinking, I created a ‘criminal’ profile based on my ex boyfriend, listing everything that I was feeling towards him and the breakup, including things like, ‘breaking my heart, I hate him, how can he go off with someone else, I hate valentines day.’ I did not think for one second that David Jason would actually read some of the things that I had written down or that the director would want to do a cut away shot of the paperwork.

You can imagine what happened next… I heard David Jason’s voice booming across the set, “Who has written this and who is so heartbroken?” silence, and slowly I realised what he was referring to. I scuttled over to him, “erm, sorry David Jason, that was me, I didn’t think that you would actually read what I had written!” David Jason just looked at me (for what felt like an eternity) and then burst out laughing, “Ha! The man is a fool! But I am pretty sure that we can’t shoot a close up of this, unless I am investigating the death of a relationship which I don’t think this episode is about!” Cue David Jason and the Director laughing about what I had done (and me just wishing the ground would open up and swallow me whole) and the Director having to cut the close up shot of the paperwork due to my terrible unprofessionalism and ultimate heartbreak.

Another time during that shoot, I measured a bus stop sign incorrectly for the graphics that were being printed to cover it up, so when the graphics arrived, they were the size of a postage stamp and in no way would cover what they needed to. This is when having a brilliant props team is invaluable. I don’t know how, but together we patched something together and I absolutely got away with it – this is definitely where the rule ‘measure twice, cut once’ is incredibly relevant!

I left the glamorous world of TV in 2013 after working for a few years on other shows and mainly Coronation Street. My biggest claim to fame when I was there was being part of the first live episode. What an experience!

The TV world was a huge part of my life and I realise how lucky I was to have had that experience for many years. Whatever shoot I was on, everyone became family. We went through the highs and lows of life together and I treasure my memories of that time.

I am still in touch with a lot of my colleagues thanks to social media and I still love catching up with what they have been up to on set or what they have moved on to do. It still gives me a buzz whenever I see someone I know flash up on the credits and I know that my kids are sick of me saying ‘I’ve met them’ or ‘I’ve worked with them’ and then start to reminisce about ‘the good ole days!’ Mr Me-Myself-And -Eye still works for ITV in the post production department and it is so lovely when one of my old colleagues will ask about me or send their love, especially when he comes home and says ‘”someone was asking about you today, you know, the lovely lady with the brown hair” and I immediately know who he is talking about!

A huge thanks to everyone who I worked with during that time, not only for shaping my career, but for also giving my tons of stories to bore my children with 😉

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.

Driving Home For Christmas.

Actually, I’m not driving home, I’m currently shuffling down the motorway on my way back to Southampton for round 3 (ding ding, round 3!)

I have not been feeling great in the lead up to this one, don’t get me wrong, I have managed outwardly to be, ‘I’m fine, totally fine, nothing to worry about’ but inwardly it has been tough. I don’t know if it’s the time of year or because it’s been 2 months since my last treatment and so I’ve had more opportunity to think and catastrophize about the situation but the deep feeling of anxiety in the pit of my stomach has been difficult to ignore at times.

Me being me, I have gone into overdrive with the things that I can control. ALL Christmas presents were bought and wrapped by the first of December (please imagine the smug look on my face, Smuggy McSmuggeson)* and Mr-Me-Myself-And-Eye has been given the run down on what is for who and what needs to go by the tree and what needs to go in stockings causing many confused looks by him as he tries to understand my logic. My Ironman training has become more focussed rather than just messing around with a bit of running here, a swim there and my (indoor) bike sessions and swimming have both increased in distance and time. I have gutted the teenager’s room and cleaned and tidied it and have given her strict instructions to keep it that way otherwise she will feel the rath of Grandma (I always find it easier to outsource the discipline for my kids, mainly because they just roll their eyes in a ‘here she goes again’ way whenever I try) and I have pre ordered all of the online food shopping until the first week in January, just in case…

Having some form of control over what I can does help, it counteracts handing over my physical self to Dr Relaxed, Dr Laidback and Dr Knows His Shit but I did just check that they were all rested and not rundown (unlike the rest of us dragging ourselves to the Festive break) before setting off.

My uncle Mike also came up with a great analogy that I really relate to. He said that the treatments were like running a mile race on the track (4 and a bit laps – Have I mentioned that I like to run… 😉 ).

Lap one is ok because you don’t know what you are doing and it’s all a bit exciting, lap two, you are getting into your stride and you still feel ok. Lap 3 is the hardest because everything is starting to hurt, your body is telling you to stop because it is not normal and the lactic acid build up in your legs and lungs is causing you a world of pain. Lap 4 is the glory lap, the one where you know you are at the end and so give it your all and then there is the last bit when you basically blank out and then wonder how on earth you made it to the finish line!

This round is my lap 3, the one that is going to hurt the most mentally. If I can just get through this then the next one should be the glory lap and then a bit of blanking out and then I should be home and dry.

So as we fight our way through the endless traffic, heading into lap 3 and round 3, I want to wish you all a happy Christmas and Hanukkah Sameach. I appreciate all of your messages and well wishes and hopefully I’ll see you on the other side for lap 4!

*Obvs not the gift from Father Christmas!

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.

Words Matter

I have started to take issue with the word ‘terminal’ To me, it gives a sense of finality, an ending, where everything stops. I think of a train terminal, the end of the line where the engine cuts out and the lights go off. The other difficulty that I am having with it is that I don’t actually feel poorly and I don’t look like anything is wrong. This has been helped by the iron and blood that I accepted willingly after my last treatment and most people that I have bumped into since round 2 have said ‘wow, you look well!’ (Baring in mind I am a child of the 80’s and 90’s and every time some says that to me I have to stop myself from responding with ‘you mean I look fat..’) and so it feels really strange to tell people that I have ‘terminal cancer.’ and I have a habit of being quite flippant about it as if I am telling them that I ate eggs for breakfast and then I always end in a bit of a nervous laugh… WHY AM I LIKE THIS?!

I also don’t know what to do when friends that I haven’t seen for a while say ‘Hi how are you, what have you been up to?’ I mean, I know that I could lie and say that I’m fine and that I haven’t been up to much but when I do that, it feels even more awkward and I always end up saying something that makes the situation even more uncomfortable and then I just start to spiral and fill the space with noise and twitchiness. I also have a paranoia that if I say that I have ‘terminal cancer’ they are not going to believe me because I don’t look poorly! It’s a vicious circle of angst!

I think the answer is to call It something else… ‘incurable cancer, a slight issue with my liver, an illness that currently is making me look well and healthy but will, in the future be my downfall…too much of a mouthful?

Aside from my continuing angst about telling people and my inability not to be incredibly awkward at all times, I have a reputation of doing things (and dragging friends, husbands and family members) into extreme things that seem like a good idea. I think that I have mentioned this before but for one of Mr-Me-Myself-And-Eye’s birthdays I booked a mountain marathon event in Scotland where we spent the night before in a tent in the worst storm that Scotland had had in years and then had to spend the day afterwards in the pissing rain navigating around the the hills of Scotland. Another time I booked a 100km race as a wedding present for Mr-Me-Myself-And-Eye which actually broke me for months afterwards… my friends are always cautious when they open a message from me as it probably contains a link saying… this looks like fun! I mean, generally the actual events that we do are not fun in the moment but we have lots to laugh about retrospectively…. A particular highlight in one 30 mile event 3 weeks after I had my eye removed was my friend Katie losing her sense of humour* 27 miles in when we had taken a wrong turn and taking my walking sticks that were helping me see and navigate the hilly course to help her to the end. She wasn’t in the mood for me to say no (unsurprisingly I had suggested the event) and so I didn’t argue with her. We laugh a lot about that day now…

*She lost her sh** BIG time.

So it won’t be a surprise to anyone to know that I have dragged a very good friend into taking part in a crazy event in Leeds next year. I’m not going to say exactly what it is yet but needless to say I am currently woefully underprepared, I’ve still got two Chemosaturation treatments to contend with and I don’t own a bike… oh and I have an illness that currently is making me look well and healthy but will, in the future be my downfall.

Wish me (and my very good friend who I hope still is my friend after the event) luck!