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All aboard the cancercoaster

July 15, 2019

33 days ago I found out I had breast cancer.  

 

I sit here writing this the day before I start my chemotherapy.  (I am still not attached to that sentence).   It has been a fascinating 33 days, I have become a breast cancer expert, could easily take someones blood now, maybe even perform a boob biopsy, know my hospital number off by heart and could get around the hospital blindfolded.  I have learnt so much about the power of the mind, the human instincts that kick in in order to help you survive and the complex, emotional intricacies of trying to deal with a life threatening diagnosis of cancer.  It is the most surreal experience I have ever had in my life.  

 

I can liken it to waking up one day and being told that everything you thought you knew about yourself and your health along with all those future plans, daydreams and hopes you have, the everyday life you bimble about in, your work, your relationships, your actual existence on this planet, are all going to be thrown into a massive spinning black hole and you have no fucking idea if they are going to surface again and if they do, what they are going to look like.  And the best thing about that; you have NO choice in the matter.   

 

 

When I first found out I went into practical mode, plotting dates of chemo, surgery and radiotherapy, telling myself I would be done in March 2020 and could then get on with things, writing lists of some of the admin I would need to sort when "chemo brain" kicked in.  I wanted to be super organised.  I would go to work in between appointments, ride my bike and carry on as if everything was normal.  This was just an inconvenience and there were a few tests I'd need and then the journey would begin when chemo started and then it would be over. With an organised calendar and a pool of people who could come with me to appointments I was sorted.  This was going to be easy.  

 

Hahaha.  How wrong was I.  The journey begins the minute you find out you have cancer.  I just didn't realise it at the time.

 

In 33 days I have been to 18 appointments,  2 of which were surgeries in the last 5 days.  I have pain under my left arm and a frankenstein neck on the right side.  Sleeping is not fun and I tried to move a small slab in my garden yesterday and cried in pain.  I don't know how much blood I have given or how much radioactive fluid I have taken on.  My arms hurt from the needles and my boob is still black from the biopsies I had 7 weeks ago and then 12 days ago, same boob, same location.  I am now donning a smurf nipple, turned blue by some dye used in surgery which is likely to be around for a year and am literally waiting for the menopause to start.  I have had my first panic attack whilst compressed in a bone scan machine with a table size plate 1 cm from my nose, it felt like I was in a coffin.

 

You would be forgiven for reading that and thinking yikes, that is a lot of time at the hospital, you must be nakered.  But what I know now is, the above summary is just the surface level of dealing with cancer, it is the motions you go through, it does not represent the real source of your exhaustion.  It is just merely something you had to "do", to turn up for, to endure and actually I've found it fine, but that is because I am detached from it. 

 

It is not really me who is having a knitting needle sucking tissue out of their boob, it is not me having a lymph node removed or another injection, or an MRI, or god knows what scan.  It is not me being shown around the chemo suite.  It is not me they are putting wigs on.   It is not me they are telling I also need another years worth of injections and that this treatment is actually 18 months long, double what I initially though.  

 

I can therefore show up and go home (when I'm not thinking I'm trapped in a coffin on an xray machine, hell I was present for that bad boy).  I feel numb to it and detached.  Like I am watching myself from above.  I believe this is how the mind allows you to deal with it.

 

 

The exhaustion and turmoil comes from the slow realisation that it is you that this is all happening to and that it is you that has cancer. 

 

The exhaustion comes from waiting on the all the results of these scans and tests, it almost feels like people, including yourself, forget that all these motions you go through are for a reason.  They are trying to find out if your cancer has spread.  You are constantly waiting to hear back about a result.  Your mind wanders, those dark, devilish thoughts waiting in the wings to get a grip and convince you you have cancer everywhere.  There are no words that can describe how that fear feels. I feel fortunate that I have only suffered at the hands of those thoughts on a few occasions, it knocked me off my feet.

 

The exhaustion comes from trying to emotionally navigate each day, nothing has changed but then everything has.  Everyone that cares about you flocks around you, you are showered in love and company which is amazing but nothing has changed so it feels weird.  You still want some space, is that selfish?  You don't want to talk about how you are feeling all the time but you understand why other people want to check you are okay.  A wrongly timed, "how are you feeling", or "what happened today" can instantly change your mood and your energy levels. 

 

You feel guilty for wishing people would just stop asking, but then if the conversation turns to utter menial crap and you are in a pensive mood, you can look in bewilderment at why the hell that person is bothered about that.  You can't say anything though, you long to be bothered about the same menial crap and wistfully think about life before your diagnosis at a time when irritating people on a train were your biggest worry.   You can feel like you go in "report" mode, reliving every appointment, conversation, thought and feeling of the day to the people that care, it is exhausting. It was the first thing I realised after a couple of weeks and had to stop.  

 

 

The exhaustion comes from making decisions around your fertility.  I don't even have the words to relay what that has been like.  You are asked to act now, in this present time, under these unfathomable circumstances, based on what you might feel in the future about a subject you have never really thought about in any great depth.  Your innate womanly instincts throw curve balls in when you think you have made up your mind, you try to predict what it might feel to regret something a few years from now whilst in the back of your mind you don't really know if there will be a few years from now.  You decide you must do what you can, because that is the right thing to do right?? But then you learn, due to bureaucracy, that you will pay for the pleasure and get yourself in to a world of debt, not to mention the costs in the future.  But you will have the option, but what if you don't want the option when the time comes?  What if you don't want the debt?  Does that make you a bad person that you are putting a pound sign next to the choice about a baby?  Why the hell should you have to pay a penny?  If only you got cancer a few months later, it would have all gone smoothly and at no cost. You make a decision and then learn due to annual leave that it can't be done in time. 

 

You give up, you fight again, you give up, you wonder, you try to predict, you then become so done with it that you can't even talk about it without your brain shutting down so your sister takes on the battle.  Battle.  I feel like I am battling for my fertility.   How very wrong is that. 

 

 

There has been no time to process anything, but then I wonder if I had of had loads of time on my own, would I have sat there and processed anything?  Probably not, I probably would have sorted out a drawer that didn't need sorting or watched endless mtb clips on youtube.

 

In 24 hours I am starting chemo.  What ?!?  I have no idea what is going to happen.  I like to think I will be a certain way but the past 33 days has taught me cancer comes with a whole world of uncertainty and you simply have no idea. 

 

What I do know though is that although cancer has pissed me right off, causing me to loose money, to cancel holidays, affecting my ability to plan and commit, causing me to loose my sense of freedom, giving me a shit load of things to think about that I wasn't ready for.  It has shown me that I have a very fierce inner strength and I am strong. It has reinforced that humans are wonderful and I am very lucky.   It has shown me that although my health and fitness has nothing to do with my diagnosis, the fact I am where I am has put me in the best position to fight it and recover.  It's as if being off sick with depression and all that mentalness was really in preperation for the bigger battle that lies ahead.

 

Bring it on.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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