Relief: a brief update

I’m happy to report that my visit to the hospital on Wednesday did not bring me bad news.  I was told that radiotherapy can continue to affect the treated area for some considerable time.  My reaction is not common, but thankfully it looks as if it’s not cancer-related.  Most of me feels very reassured by this.  I can finally relax knowing I don’t have to undergo any more treatment.  Yet there is still an anxiety inside me which persists.  Somehow I just can’t accept that the cancer has gone, or that it won’t return.  I wonder if there’ll ever be a day when I feel totally free from cancer.

Uncertain Times

Since having cancer my determination to stay alive is something that permeates my consciousness.  I am ever-aware of my fight for survival.  Stronger still is the need to make the most of each day.  At first this was a pressure which had the effect of stifling my creativity.  I was so desperate not to waste time that I cupped it in my hands like a trapped butterfly, afraid to let it go.  Once I became aware of what I was doing I slowly unfurled and now my spirit feels free again.

But once again I am facing uncertainty.  After a visit to my GP I have been referred for more tests, which are scheduled for July 13th.  The familiar feeling of not knowing what’s in store, not really wanting to know yet disliking being in the dark – it all buzzes round my head like a swarm of angry bees.  It’s possible that the changes in my breast are due to lymphoedema, but it’s also possible there may be a more sinister cause.  I’m so scared of the worst scenario becoming a reality.  I feel as I’m in some kind of limbo.   Being suspended from a great height and looking down at my situation has its merits in that it stops the panic taking hold of me.  But then there’s the frustration that I might be wasting precious time. It’s that not knowing – it gnaws away at you like an invisible worm.

I think this is something I may have to expect from cancer.  Overcoming one hurdle and then stumbling upon another when you least expect it.  I wonder if I’ll ever feel  truly free from the shadow of cancer.  If this latest scare turns out to be just that – a scare – I’m almost certain there will be more.

But whatever happens I know that I won’t go down without a fight.  I am very clear about what I value, and I’m not going to relinquish what I value just because the mountain I’m climbing suddenly gets a thousand feet taller.  July 13th will come and go.  Before then I’m going to London as my Guide dog Trudy is a finalist in the Guide dog of the Year Awards.

Trudy’s award is a welcome distraction from my anxieties, and I think if I look hard enough I’ll be able to find a few more.  But although distracting myself is one way of dealing with anxiety, I’m also trying to accept what I think and feel.  Learning to accept that this is what I’m feeling rather than always trying to push it away, might well preserve my energy for when the fight is really on.

I will be so relieved when this particular uncertainty has evaporated – whatever the tests reveal.

Tribute to a Painter

It’s Father’s Day, and this is my gift to my Dad, who lives on through his paintings but is no longer in this world.  My Dad graduated from St. Martins School of Art in London in the 1960’s.  My earliest childhood memories are fused with colour and the smell of oils and turpentine.  Brushes of all shapes and sizes, sponges, planks of wood, thick layers of dried paint, home-made palettes and mixing pots, putty and huge flat-sided pencils.  These are just a few of the things which were always there.

My Dad resisted commercial art because he believed it stifled creativity. Therefore he chose not to make his living as a painter.  For two decades he held numerous jobs in factories, and finally at the end of the 1980’s he joined the Royal Mail as a sorter in one of the main London Sorting Offices.  Despite his physically demanding jobs he devoted his spare time to painting.  If he wasn’t painting he was sketching, either with charcoal or black marker pens which used to make my eyes water with their fumes.

When we were young children he worked night shifts so that he would have some time in the late afternoon to paint.  While he was working on a painting we were not allowed to see it until it was almost finished.  The completion of a new painting was always a very exciting moment for us.  Sometimes we’d come home from school and the latest work of art would be hanging on the wall to surprise us.  We’d stand round and gaze at it, often lost for words.  My Dad used to watch our expressions and although it was sometimes hard to find the right words, I never disliked any of his paintings.  I had my favourites of course, one of which has pride of place in my living room. (This is the featured painting at the beginning of this blog).

My Dad mainly used oils, so his paintings always took ages to dry and there were certain no-go areas in the house.  The paintings were very rich in texture, and I remember my Dad often struggled to decide when a painting was finished.  Like many creative people, his perfectionism frequently caused him sleepless nights.  The rough texture of my Dad’s paintings was fascinating to us when we were small children.  We didn’t realise it was intentional, and tried to be helpful by picking off the “lumpy bits” which defined the paintings.  My Dad must have known, but he never said anything.

My Dad was a purist when it came to colours, and for this reason we did not have a colour TV.  We mumbled and grumbled about this but he was totally unmovable on the subject.   Colours which were dull or “phony” were a constant source of irritation to him.

As he continued painting my Dad’s style became more abstract and expressionist.  His creative periods gained in intensity.  He often wished he could devote all his time to painting, but having to provide for a family of six made this impossible.

When I was a teenager he strove to exhibit his work at the Royal Academy‘s Summer Exhibition.  As he didn’t have a car at the time, he had to lumber his paintings across London on the tube, and always arrived back home exhausted and anxious.  It was a tense time for us all waiting to hear whether his work had been accepted for exhibition.  Sadly it was never to be, despite several attempts.  He used to go back and collect his rejected paintings alone, and the despair affected us all.  It was heartbreaking to see my Dad’s spirit crushed after setbacks like these.  Yet he never gave up.  He never wasted his spare time.

What grieves me most is that he never made it to retirement.  The free time which he worked and longed for did not arrive in the way he’d hoped.  In 1997 he contracted a progressive muscle-wasting disease which slowly took away his mobility.  During his final few years he was unable to use his hands.  The hands of a true  genius had lost their power.  The injustice of this still torments me.  My Dad died suddenly in 2008, and I miss him so much.

But he lives on through his paintings.  Every time I touch my treasured favourite painting with its familiar “lumpy bits” and hand-crafted frame, my Dad’s spirit spurs me on.  He was a man with ideals and he never compromised, even when things were tough.  His perseverance, endurance and selflessness remain with me.  There are so many things I could say about my Dad as a person, but this blog is a tribute to him as a painter.

My Dad might not have become a household name or exhibited at the Royal Academy, but his paintings will survive for generations.  He will continue to inspire me as long as I live.  

Going blind – what then?

Many people have asked me whether I’d rather be blind than deaf, or if I wish I’d been born blind rather than lose my vision at 18.  I never have much of an answer to these questions, as I can only deal with what I know.  For a lot of people, going blind is their “worst nightmare”.  I met this nightmare head on when I became a paid up member of the “blind community” in 1989.

Although I was born blind in one eye due to a condition known as coloboma/microphthalmia, this did not prevent me from attending a mainstream school.  I  considered myself to be more or less the same as my siblings and other children my age.  When I gained a place at St. John’s College, Oxford, to read Classics – I thought I was entering paradise.  I loved Classics, and still do in my heart.  But this is where my life took an unexpected turn.  During my first year I experienced a sudden onset of glaucoma and within weeks my useful vision had more-or-less disappeared.

I felt utterly helpless and at the mercy of other people.  For a short while I  tried to carry on as if nothing had happened, though reality came down on me pretty fast.  It was obvious that I could not continue at Oxford, so plans were made for me to attend the Royal National College for the Blind.  But I had no intention of readjusting or rehabilitating.  All I wanted was to see again.  That was my one and only mission.  Therefore I resisted all help and refused to consider using technology.  In those days assistive technology was fairly basic.  The BBC computers with early versions of JAWS had absolutely no appeal for me.   If anything, technology scared me –  I couldn’t even type my name.  Everything was beeps or bumps.  I wanted to obliterate beeping clocks and tactile mats.  They were reminders of my blindness and I pushed them away.

So my first days at the Royal National College for the Blind were pretty hellish.  There were some people who, like me, had recently lost their vision.  Others had never been able to see, and others could still see but not particularly well.  The thing I found most difficult was being surrounded by blindness.  It wasn’t a world I accepted.  I don’t even think I considered myself to be blind, I was just me.

Looking back it was the psychological impact of blindness that affected me most.   Accepting my situation was far harder than not being able to see the colours of my clothes.  As I’d never learned braille before, I did not take to braille easily.  I just about learned to read braille but I quickly decided that it was not going to be my main medium for communication. Expert braillists can read two lines at once with both hands, but they’re usually people who’ve started at an early age or really want to persevere.  I turned to audio technology but my brain resisted.  I’ve got a photographic memory, so I think visually.  I found that my good memory invariably began failing me, and this increased my frustration.  Even now I have to translate audio messages into a visual pattern in my head.  For this reason I left it about 5 years before attempting to listen to an audiobook.  The feat was laborious, and I found it hard to concentrate.  If this was how I was meant to “read”, I hated it.  But with no computer and no other means of reading I didn’t have an alternative.   Once I’d accepted this, I reluctantly started to borrow recordings from the RNIB library.  Now I can’t get enough.  With MP3 downloads and iPads, the audiobook scene is improving.

Slowly I became better disposed towards gadgets and technology, and now I’m gadget-mad.  The beeps that used to plague me 20 years ago are now my mates.  With increasingly advanced technology the practical problems of being visually impaired are less of an issue.   There are gadgets which enable you to safely make a cup of tea, label tins or files, measure quantities etc.  My talking microwave is the star of my kitchen, and my mobile phone with TALKS is my right hand man.  There are gadgets and aids for just about any indoor task.  Computer screen-readers such as JAWS and Guide have certainly transformed my quality of life.  My three year-old laptop is my launch pad.  The only barrier to the world is the growing number of websites with poor accessibility, but that’s  another story.. The down side of specialist technology/gadgets of course is the cost.  Being visually impaired is not cheap, and this is accentuated by the fact that in the UK the vast majority of blind people are without work.

So much for gadgets and audio technology.  What about the social side of life?  Before I qualified with my guide dog Trudy I struggled daily with the general public.  Unfortunately, most people steer away from  someone tapping a long cane on the pavement.  I am not that good at asking for help, so more often than not I encountered difficulties when I was out.  I used to bump into lamp  posts and apologise to them or ask if they’d please let me by.  When you’re blind and stressed lamp posts and humans are not distinguishable.  Making a fool of yourself in public is one reason why most visually impaired people refrain from going out.  I can laugh at myself now, but it took time.

I found that there were people who avoided me through fear, and others who raised their voices when they spoke to me. Sometimes people would think they were helping by grabbing my long cane and pulling it across the road with me trotting behind in alarm.  It seems funny now.  I’ve had so many disasters with public transport that it’s amazing I’m still in the UK.  I ended up at Heathrow Airport once instead of Victoria station.  These crises often bring out the kind and helpful side of people.  Nevertheless I began to see my long cane as a huge barrier when it came to socialising and being accepted by people.  Isolation is a common side effect of blindness.  I’ve lost count of the number of times I’m still talking to someone after they’ve left the room or wandered away.  Another favourite is to answer people when they’re not addressing you.  Not being able to read body language puts visually impaired people at a serious disadvantage in social situations.

I became quite reluctant to go out on my own, and often left my long cane at home.  This meant that people invariably thought I was drunk because I was stumbling along bumping into things.  There were times when I’d  get a taxi home after being out for just ten minutes.  I quickly became lonely and found myself retreating into a very dismal space.  Often I would lament the loss of my books and my academic career, and wonder why something which I loved so much had been snatched away from me.  These were the bleakest moments.

Training with a guide dog was something I had considered within months of losing my sight.  However, I needed to regain my confidence before I could manage a dog.  I knew that a guide dog was right for me, and GDBA have been a tremendous support ever since I first contacted them in 1993.  This support included hours and hours of mobility training and traffic skills training over a long period.

15 years later, in 2008, I experienced the happiest day of my life when I was matched with Trudy.  Trudy was worth waiting for.   At the time I was living  in residential care, and the outside world was a terrifying tangle of sounds and unfriendly people, and obstacles which rammed into your face and sent you sprawling on the ground.  But Trudy has shown me another side to the world.  Guide dogs attract people, so I suddenly found myself surrounded by well-wishers and dog-lovers.   The obstacles melted away into the background as Trudy’s job is to steer me round them.  I became eager to explore what I’d been missing for so long.  My blindness became an acquaintance rather than an enemy.

Three years later I am living in my own flat and giving talks to schoolchildren and adult groups.  I am about to begin lecturing at a local University.  Sometimes I look back over the rocky road and wonder how I got here.  It’s been worth the blood and tears just to feel this freedom.  But a guide dog isn’t the answer for everyone.  There are 4,500 guide dog owners in the UK.  But 180,000 blind and partially sighted people never leave home alone.  Not long ago, I was one of them.  .

Nerves are not always the enemy

So many people have a fear of public speaking (or glossophobia). The notorious wedding gaffs, the blundering after-dinner soliloquy, politicians who pulverise their careers in a single speech. The list of public speaking nightmares is endless. Many of us know people either directly or indirectly who have got blind drunk just to face “the mob”.

It makes no difference whether “the mob” is three people in a back room or a worldwide audience listening via satellite.  An unknown audience looms like a demon, waiting to devour you the minute you falter. Yet oddly enough,this vulnerability – the moment in which you hesitate and see your speech assuming the shape of a large pear – is what can connect you to your audience.  They see that you are human, and most of them understand.  A polished speech delivered with effortless confidence might well get a good reception. But a speech which comes from the heart will often be more memorable.

I do not consider myself to be a first-class public speaker. When I became a volunteer speaker for Guide dogs I had no idea whether the experience would destroy my confidence or increase it.. Something inside me relished the challenge, but the thought of actually delivering a speech churned my stomach. I had no previous training or experience, so when I received a phone call last Summer asking me to give a talk at a local primary school I was terrified.

The terror manifested itself physically.  Standing in front of the entire school,  my voice wobbled, my hands shook, my heart clapped against my chest, and the sweat poured down my face. My guide dog Trudy was nonplussed, and lay in a quiet heap at my feet, steady as ever. As my nerves escalated I began to falter.  Suddenly the realisation that 90 children were hanging on my every word  sent me into a paroxysm of panic. They were all listening to me! (This is apparently known as the “spotlight effect”). What if I messed it up? What if I couldn’t finish?  I was speaking without notes as I’m not a braillist, so everything I needed was inside my head.  The same head that was swimming with half-formed words and misshapen thoughts. I froze for a good few seconds. The silence thundered in my ears. This was make or break, and I knew it.  But somehow I managed to regain my composure. The conviction that I was about to die became less of an issue. My voice still wobbled like a de-railing train, but I made it to the end. What’s more, I got a positive reception from the children and teachers. This was my first building block in the confidence tower. When the talk was over, the adrenalin buzzed through me and I felt truly elated. The relief was indescribable. Afterwards I wondered what had made my first talk a success. After all, my nerves were bubbling for all to see. Yet this seemed to bother me more than my audience. They listened and responded to me, they felt my passion and they knew it was real.

I have given several talks since, mainly to adult audiences.  My nerves still plague me and I cringe at the sound of my vibrato voice.  But at least the fear is very familiar now, I know exactly what to expect.  I also know that the fear won’t get any worse, it won’t kill me and it’s  never forced me to abandon a talk and walk out.  I would say we’re evenly matched, my fear and I.  The feedback I’ve received has shown me that being nervous does not necessarily alienate an audience.  They hear the emotion in your voice, they see the raw struggle as you shake and stammer, and they’re alongside you when you win the battle.

Being a volunteer speaker has given me fantastic experience.  Talking about guide dogs and GDBA does not attract antagonists – quite the opposite in fact.  Speaking to largely sympathetic audiences has allowed my confidence to steadily grow.  My experience has taught me some valuable lessons in how to connect with an audience, young or old.  The following tips may be useful.

1 R  Relevance – Make sure your speech is relevant, know your audience, find out what they want

2 I  Interaction – Involving your audience keeps them focussed and enables you to understand them

3  P  Preparation – Make sure you’ve researched your talk and established which points are important

4  P  Practise – Rehearse your speech, read it out loud over and over again and get the rhythm right

5  L  Length – Find out how long you’re required to talk for and time yourself beforehand

6  E  Enthusiasm – Enthusiasm is contagious, it defines your delivery.  Speak from your heart

One final tip: humour is a great ice-breaker and if you can laugh it will dissipate your tension as well as add to your audience’s enjoyment.

Post-treatment Free Fall

When I first found the lump I did what several people do – tried to ignore it.  Sometimes I could go for months without thinking about it.  But then (usually in the shower) the niggle would start to worm away inside my head: “What if it’s cancer?”

When it was just my lump it was my secret.  Deep down I knew it was cancerous, and it was more than a general anxiety.  I knew in my heart that this was nothing to do with hormones or my menstrual cycle.  So in the end it was a case of when to visit my GP, not should I?  shouldn’t I?  I kept it to myself as long as possible, but all the while I knew that my lump’s hiding place would have to be exposed.  Confiding in a friend was the first step on the “cancer journey” for me.  She came with me to the GP, and we both talked ourselves into thinking it was nothing serious.  The statistics of breast lumps are that around 80% turn out to be benign, so I put myself in that 80% camp – though deep down I knew I wouldn’t be there for long.

The GP visit fuelled a whirlwind of events.  Within two weeks I was at the hospital undergoing a mammogram and biopsy.  My guide dog Trudy was behind the curtain with a friend, and I could hear her crying while the needles went in – first under my arm, then into the breast itself.  Although the axillary biopsy was quite painful, I found myself calling to Trudy to reassure her that everything was going to be OK.  But within half an hour I was listening to the Consultant: “I think you have a small breast cancer”.

The shock sent waves round my entire body, but I didn’t feel emotional.  My friend appeared more devastated than I did.  I went into fight or flight mode, and the battle was definitely on.  The results were confirmed two days later, which was exactly a week before Christmas day 2010.  I remember being surprised that I felt OK.  I was still exactly the same, except that I knew I had cancer.  The lumpectomy was booked for New Year’s eve, and after that it was an agonising wait for the pathology results.  Those two weeks dragged their feet as if they were shackled by a ball and chain.  I thought I was definitely going to need chemo, and tried to joke about losing my “barnet” although I dreaded the prospect.

But thankfully as far as cancer results go, mine were positive.  It had been caught early, and was not an aggressive cancer.  I was prescribed tamoxifen as my cancer was oestrogen-positive, and told that 5 weeks of radiotherapy would begin in about a month.  The tamoxifen affected my mood and I became very irritable and depressed.  The physical side effects (i.e. nausea, hot flushes, itching) were nothing compared to the sudden change in my emotional state.  Since coming off tamoxifen 2 months ago I now know that this was definitely the cause of my depression.

The radiotherapy didn’t affect me until the last two weeks.  My skin broke down completely and became infected.  The fatigue began taking its toll.  I literally couldn’t resist the urge to lie down – it was like a magnet pulling me towards the sofa or bed.  As the radiotherapy treatment was out-of-County in Cheltenham General hospital, that became my life for about 6 weeks.  It was Cheltenham, home, bed, Cheltenham, home, bed… Trudy’s routine was out of the window, and for this reason I decided to board her with Guide dog volunteers while I was having treatment.  But the separation was more painful than I’d anticipated and my life fell apart.  After two days, she came home and we endured the “radiotherapy days” together.  Trudy’s companionship and unerring support kept me from going under.

Then suddenly (or so it seemed) the treatment finished.  No more hospital appointments or doctors, just an empty space.  Was I supposed to be “back to normal”?  Was this it?  My empty space became a haven for fears and anxieties, suppressed anger, confusion and a sense that I should be happy, relieved, even grateful.  In truth I felt that I’d been abandoned, and was free-falling into an abyss far away from everyone.   The invisible cancer curse followed me everywhere.  I couldn’t express my fears easily as those who cared about me were rooting for me to be my “old self” again.  But my old self has left, and at first this realisation annoyed me because I felt the change had been forced upon me through no fault of my own.  Now though, the rawness of cancer and cancer treatment is slowly starting to heal.

I’m beginning to feel that I’ve been given a second chance, and it’s up to me what I do with this second chance.  As time goes by, I’m hoping my fear of a recurrence or that the cancer has already spread, will lose its grip on me.  There’s now an urgency about life, which gives me zest, and flattens complacency.  I consider myself very privileged to have had such a rude awakening.  None of us knows what lies ahead, but if you’ve battled with cancer or something similar you make damn sure that you value what you have and make the most of it.  I have Trudy who is unconditionally loyal, I have friends who have stuck by me even during my “tamoxifen tantrums”, and I have life.