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….

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

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!