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….

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.

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.

Ding Ding, Round 2

Before I could even get back into couch to 5km it was time to pack up and get myself back down to Southampton ready for round 2 of Chemosaturation. To say that I was anxious would be an understatement. People kept asking if I was feeling better about it because I knew what was coming… the problem was… I KNEW WHAT WAS COMING! It’s almost like randomly punching someone in the face and then saying to them, “I’m going to punch you in the face again now, but it should be better because you know what is coming!” It didn’t feel better and what made it worse was the fact that I had no idea if this treatment was even working. All I knew is that it was brutal and I felt like dogshite afterwards and the thought of doing it all again wasn’t really appealing.

I was also struggling with severe anaemia, something that I have had for quite a while but had got used to the utter exhaustion and slightly grey look coupled by a constant feeling of breathlessness. When I told my CNS Vicky what activity I was doing (walks every day, a few jogs around the block and trying to keep up with a 20 year old Aussie lady on YouTube as she throws around 20kg kettlebells compared to my dismal 8kgs) she was a little bit surprised and asked how I was physically able to do it. It is amazing what becomes your norm though. I had felt like death (is it too much to use that comparison?!) for so long that I thought that it was what every over 40 year old female felt like… turns out, it isn’t normal!

For this round, I valiantly declared that I was going to travel down on the train on my own and Mr Me-Myself-And-Eye would stay and look after the kids (and he had some wallpapering to finish and if there is anything that Mr Me-Myself-And-Eye loves more than anything, it’s a distraction from the task in hand and I wasn’t going to give him that opportunity) so I said my goodbyes and headed off for the long journey down south (hearing the small one say ‘enjoy your holiday’ as I left actually broke my heart a little bit) The train journey down was pretty uneventful, a very loud man sat opposite me talking on his phone until the conductor shifted him and I had fun watching the obscene amount of old people getting on at Birmingham all heading down to the barmy Bournemouth with their extremely large suitcases and Panama style hats.

Could I have chosen a more boring picture to show that I went via train…?

It wasn’t until I got to the hospital and had gone through my ‘hotel’ check in that everything hit me like a 10 ton truck. This was going to be shit and I was down here in my own and I had no one just to sit with me and help me wallow in how shit it was going to be. My dad would be arriving on Tuesday ready to take me back on Wednesday or Thursday but I needed someone there before the procedure to talk rubbish to and release some of the anxiety. It was a terrible idea going down on my own and I won’t make that mistake again… I might even hold auditions next time, who can be the most entertaining on a 6 hour journey and who can help me wallow the most. If anyone fancies a trip to the South Coast, just let me know!

Despite my anxiety, the pre op started and Dr Laid Back and Dr Relaxed came and did their spiel and I was then hooked up to have an iron infusion to try and raise my iron levels before the procedure. I was slightly disappointed that I didn’t feel like Popeye after it, and that the 20 year old trainee nurse had no idea what I was talking about when I mentioned Popeye (eye roll…. just the one though) and then it was a waiting game for the next day.

Monday arrived and I did my James Bond escape for a power walk around the block in the morning and then waited… It did cross my mind a few times to just walk out of the hospital and get the next train home and just pretend that none of this was happening but unfortunately in my family, we have this annoying saying of ‘Corne’s don’t quit’ and after using this phrase on my poor cousin half way through an 8 mile run when she had only ever jogged a few km’s before, I felt that I couldn’t let the side down… does the comparison of a life prolonging procedure and an 8 mile run work?… Let me know your thoughts… It was then time for the walk of shame down the corridor to the operating theatre but this time the hospital had given out dressing gowns, so my arse was safely tucked away behind a thin cover (relief all round!)

I find it really strange when you walk into an operating theatre and get yourself comfortable on the operating bed, a million things are happening around you, preparing for the ‘show’ and then there you are, the ‘star’ of the show taking your opening position. Naturally I cried on Dr Laid Back and Dr Relaxed, big sobbing tears with snot thrown into the mix (which I am sure they are very used to) and then I was out for the count.

The ‘after’ was the same with the horrendous procedure of taking the lines out of my neck and groin and flat on my back for a number of hours and then Dr Knows His Shit came in (new character to the story) to tell me that they had decided to give me a blood transfusion to complement the iron infusion that I had had the day earlier (almost like an accompanying wine to a fine dinner) as he wasn’t sure that I would be able to function with all the various levels being so low. I cracked the obvious joke about hoping it was an athletes blood they were giving me (zero reaction) and before long I was hooked up and being pumped full of the good stuff!

Despite me asking for the blood to be put n a place a couldn’t see it, they decided that putting it right in front of me was the best thing to do…

Discharged and ready to go, it was time to make the long journey home (via a stop in Elstead to see my Aunt and Uncle) my dad provided the entertainment on the way back in the car which consisted of describing every services we went past on the motorway and marking them out of 10…but he did have some cracking 80’s and 90’s tunes on his playlist which more than made up for it. I’ll be interested to know if the iron and blood help me feel better during recovery this time round… If anyone sees a woman in her 40’s in North Leeds lifting up any cars or with obscenely large biceps, you’ll know it’s me and that I am doing ok!

The waiting game.

So where did I leave it?

Oh yes… May 23rd was when the lovely Mr Salvi rang with my MRI results which were like a sucker punch to the stomach. I was reeling with the information, stuck in the centre of Leeds trying to comprehend what it all meant whilst trying to keep everything together until I got home.

Mr Salvi said that the next thing that would happen would be a follow up from the Oncology department in Leeds and in my naivety I thought that would be the following week but the reality was that I had to wait 3 weeks until an appointment with them (although I did have a CT scan whilst waiting) this waiting was THE WORST. I can’t even put into words how it felt knowing that I had been told the worst possible news which would have unimaginable consequences for my family but I had to wait 3 weeks for the next steps (it was like when you were a kid waiting for Christmas, except replace that feeling of excitement with a pit of doom in your stomach)

Again, I think I was pretty naive walking into that appointment 3 weeks later, I had convinced myself that it was all a mistake as I was feeling alright in myself (the joys of living of adrenaline for 3 weeks!) and so I fully expected them to say that they had got it all wrong.

Now I don’t know about you, but when I am told that I am going to see an Oncologist Consultant whose name is similar to a much loved and celebrated elderly female fictional crime solver and Doogie Howser turns up, I do feel a bit short changed. Nothing wrong with the young very polite doctor (who I am sure was more than qualified) but I wanted to see who I was booked into see, the person with over 15 years experience, especially when we were discussing how long I have left to live.

Doogie was left to give me the awful news that the average life expectancy for someone with Melanoma (that bit is important to remember) metastatic liver cancer is 12 months and your only option to prolong any kind of life is immunotherapy, which is a concoction of awfully potent drugs that will make you feel like utter dog shit and probably land you in hospital on steroids and you most likely won’t be able to finish the whole treatment,

“We can fit you in next week to start, please sign here.”

Doogie wasn’t quite so brutal as the above, but it is funny what your memory holds on to and I certainly wasn’t that keen on the one option that he had given me. I asked about alternatives or trials that might be possible and the difference in the statistics for Ocular Melanoma liver metastatic cancer (very different beast to Melanoma) but with a shake of his head, he concluded that immunotherapy was the ‘gold standard’ and therefore the only option.

Heading out of the appointment, Mr Me-Myself and Eye and I were in shock, we couldn’t quite comprehend what was happening, but we both knew in our hearts that it couldn’t possibly be our only option and so we started to research…

When I say we, I clearly meant Mr Me-Myself and Eye. Whilst I continued to flit around pretending that none of this was happening to me and booking random concert tickets to take the kids to see Girls Allowed (they had no idea who on earth they were despite me saying “oh this is a classic – you know this”) he has the type of brain that when he is focussed on something, he will not stop until he has all the answers, it’s like a little super power of his. I knew that if anyone was going to come up with an alternative it was going to be him.

Next up, a trip down memory lane to Liverpool and the alternative (oooooh, it makes it sound like a soap opera! It’s much more boring but never the less, it was fun writing it!)

The joys of being an idiot on top of Inglebrough.

Laters,