A Snapshot of my life

I’m going to write about me.  Yes in the first person.  The only way I know how to write.  I need to get something off my chest.  I’ve lived with this for long enough.  I’m sick of putting a brave face on it.  It’s time to spill the beans.  I’ve had enough.  I’m near the edge.  I’m not going to justify my state of inner turmoil.  At this point in time I’m feeling in permanent turmoil.

These feelings came to a head recently.   I was sitting in a hotel room listening to a spiritual healer.  He was surrounded by sick people who I suppose all wanted to be healed.  Just like me.  The healer was dangling a crystal over a women’s body lying on a bed.  The crystal was totally still.  No movement whatsoever.  We were informed that her energy paths were blocked.  The healer put his hands on her for a few minutes.  He then passed the dangling crystal over her body again.  Miraculously the crystal began to spin in wide circles almost out of control.  The energy fields were now cleared.  Did this mean that she was now healed?  Had the cancer or whatever evil death warrant she had hanging over her gone, vanished into thin air?

I felt tears running down my face.  I asked myself what I was doing here with all these sick people.  Cursed by cancer and all its pain and suffering.  I don’t want this, I want out.  Not out as in dying but out of this nightmare.  I want to laugh normally again.  I want to live to an old age.  I want to skip instead of limp.  Oh no, I can’t just have cancer.  I have to have a brain tumour that affects my ability to read a book and remember what I have just read.  I have to have a cancer sitting on my central nervous system doing its hardest to disable me.  Destroy me.  So not only do I have the curse of cancer in my head, I have a disability as well that people can see.  Dragging a right foot around and having to drive with my left foot.  Not able to go for walks.  Spending time sticking plaster, blister pads, friction pads to prevent my toes rubbing and hurting.  Sometimes I curse my bloody foot.  I want to scream.  My foot is cold, so cold and useless.

The spiritual healer told me to write about how I feel.  I have to love myself before I can love others.  He talked about everlasting love.  I informed him I was tearful and didn’t know why I was feeling like this.  He inferred I had baggage.  I had to lay myself bare.  Yes I’ve got baggage, a lot of baggage.  Does a brain tumour count as baggage?  That’s the irony of it all.  I want to get rid of the baggage but I can’t.  I’ve never felt so cornered in all my life.  There’s always a way out.  I’ve never felt there isn’t another way.  Another angle, another thought process.  A different slant on a problem.  Another avenue to explore.

I look into the mirror and stare into my eyes.  Do I still see life?  Is there any sparkle left?  Has the merriment parted from them?  Is there only death around the corner?  I sit in my meditation group at Cookridge hospital.  I can see the fear in the eyes that have just been newly diagnosed.  I can see the patients that might make it and survive and the ones that have lost all hope.  The fear of cancer overwhelming them.  Zapping their strength and gripping their mind with terror.  People being told they have only months to live in total despair.  Why did they ask the question ‘how long have I got left?  The doctor will not lie, he has your scan.  He knows the statistics.  You think the doctor knows best and then they die just as predicted. 

The power of the mind is unbelievable.  Take me I’m the biggest wimp going.  When a surgeon shakes his head and says sorry I can’t operate and I look towards my sister and husband to see the horror on their faces I know I’m a 'gonna.'  It’s the first time I’ve sworn in the presence of Gods.  I’m fucked I heard myself saying.  ‘Don’t tell me the prognosis I don’t want to know’.  Is this why I’m still here?  Who knows?  I don’t.  Is this just as scary as knowing?

This is the first time in my life that I’ve chosen not to do any research.  I am aware of the type of tumour I have so I could get on to the internet right now and find out what’s in store for me.  I choose not to.  Is this self preservation or cowardice?  The tumour is sitting on my central nervous system so I can only imagine what horrors are in store for me.  I’m dreaming now of going blind in my right eye.  I’ve had this dream twice now.  The tumour is affecting the right side of my body.  I’m in bed wearing a black eye patch.  My right eye closes and never opens again.  Maybe I was a pirate in a previous life.  Surely I’m not going to lose my sight?

My consultant gave me a no change to my tumour.  In other words it’s stayed put since my radiotherapy treatment.  This is great news.  I have to hang on to this until the next scan.  Every pain in my head becomes a point of analysis.  What do I do now? I say to my oncologist.  ‘Just carry on doing what you are doing because it’s working’.   ‘What could happen I ask?’  ‘Oh if you start to have really bad headaches or fits come back in before your next appointment’.  I walked out of the room thinking fits.  I could be anywhere.  What if I have a fit driving?  What if I’m swimming or walking down the stairs.  Stop it! Stop it!  The mind again is taking over my thoughts.  If I think I’m going to have a fit I will have one.  What a dilemma.  What do I do?  Sit in the house all day and watch television and feel safe.  I feel like I’m nursing a time bomb.  It's going to go off at any moment if I dare move.

The tumour has tainted everything around me.  My husband might as well have a tumour.  Why does he stay with me?   If the boot was on the other foot I might have legged it by now.  Maybe he will when I become unbearable with my needs and requirements.  I’m not a wife I’m a burden.  I can’t do the cleaning, I can’t do the shopping.  I get down on my knees to dust something and struggle to get back up.  Changing a bed is exhausting; walking up and down the stairs is awkward.  I’m walking sideways on the stairs.  I want to live in a bungalow with no stairs.  My husband can’t see it.  I need a chair lift for the stairs.  He hates chair lifts.  Apparently I don’t need a chair lift.  Does this mean he can’t bear to think of me as disabled when I’ve come to terms with it?  He’s had to help me down the steps at the cinema.  No handrail.  I’ve stood up and not felt my foot.  I could so easily have fallen.  Maybe he’s burying my situation and is pretending nothing is going to happen.  I’m going to stay like this.  I hope he’s right.

Friends say to me ‘I can’t imagine what you’re going through.  I don’t think I could cope’ ‘What medication are you on?’  ‘Nothing’ I reply. ‘No tranquilizers, no antidepressants’.  I’ve tried getting drunk, to escape to laugh at stupid things with friends.  I stand up to go and basically fall over.  I’ve cried with my friends out of despair for their own grief.  Every time they see me they think they might not see me again or they get really silly and think I’ll outlive all of them.  I’m crying now thinking about their despair and frustration.  To have a friend who has been perfectly healthy for the twenty odd years I’ve known them and then to be struck down with a brain tumour is shocking. 

My daughters’ lives have also been tainted by my predicament.  One daughter is at University and has been crying with her tutor.  Apparently my situation made her tutor cry as well.  Is there no end to this scenario?  I sat the girls down and said ‘Don’t let the tumour destroy this family.  I want you both to put this behind you and carry on as normal.  If we all crumble the tumour will have won.  I’m not prepared to let this happen’.  So that’s what the girls are doing.  One of my daughter's plans to travel at the end of her course this summer. So she’s obviously forgotten that I might die whilst she is away.  She’s not quite as rude to me so that’s a plus.

I’ve survived two Christmas’s that I wasn’t sure I would see.  I enjoyed my Christmas dinner, which was also a bonus.  Patients who I met during my treatment who also had brain tumours haven’t been so lucky.  They’ve gone.  They didn’t make it.  Young men in their twenties less than half my age; Cancer, I hate it!  I have a duty to them to enjoy my life.  To live each day as best I can.  To appreciate the countryside, the sound of music, the snowdrops telling us it’s nearly spring.  Not to take my friends for granted. To try and give them my full attention when they have a problem; when they really haven’t got a problem.  I’ll be kinder to my husband to cook him the odd decent meal.  I’ll bake him a pie.  Not a bought one but a homemade meat and potato pie.

This chapter is the last bit for now, a snapshot of a person living with a brain tumour.  I hope this has given you an insight into the destruction that cancer can cause.  I hope that none of your family is ever tainted by this terrible disease.  On reflection I believe that people can find strength from somewhere to survive anything that is thrown at them.  The strength of mind is undoubtedly the biggest factor in surviving the unthinkable.  My life journey continues and I live in the ‘now’.  I feel that putting pen to paper has been a catharsis for enabling me to get rid of my baggage and move forward.  It’s taken me six months of attending a writing course to have the inclination to write down on paper how I’m feeling.  My tutor told me to just start writing.  Write from the heart and write about something that you have knowledge about.  Well I’ve done it warts and all!