Gail Silberman

In the blink of an eye.

It  was December 2004.  The only time that cancer had touched our  lives so far had  been watching the 3-year battle  my niece, Sharon, underwent with breast cancer, with metastases  to her liver, bones and brain.  She had chemo after chemo, lost all her  hair and got so skinny it hurt her to be hugged.  She fought so hard and with so much  heart but lost her battle just hours after I held her in my arms for the last  time – she was only 36 years old when she  died!  I was so proud of her  and told my family, “if ever I get cancer, I hope I can be as brave as she  was”.  I also swore that I would never have  chemo.

My  youngest daughter, Della, and I rarely go away for holidays  as we’ve got a houseful of precious animals that we don’t like to leave, but  relaxing at the big pool and  clubhouse in our complex, eating pizza whilst lounging on the steps of the  pool, getting brown as berries, seemed like a  pretty good substitute.  It seems  like so long ago, when life was uncomplicated and my health was  excellent.  I hardly ever got sick and didn’t even have a “regular GP” as  I seldom needed one – when I needed a doc, I went to Sylvia, Sharon’s best friend since childhood and very familiar with our family  history.  Everyone around me would get the flu, but not me.   Healthy as an ox, my late mom used to say.

The only  thing that really bothered me was constipation and anal bleeding,  which had become steadily worse  over the years.  I had a number of colonoscopies during the ’90′s, but  other than having a spastic colon and IBS, they could find nothing  wrong.  I spoke to my doc on many occasions and usually, she didn’t even  examine me – just said it was “bleeding piles” and gave me a script for  Scheriprocht cream.

However,  in January 2005 I realised that the bleeding had become worse and constant and  that I was bloated and very uncomfortable.  Going to the loo had  become more painful than ever and I never felt “empty”.  I made an  appointment with the doc and insisted that she check it properly  this time – in other words, do a rectal exam.  She looked, felt, and  assured me that it was “thrombosed  piles” which could easily be fixed  by a surgeon.  She suggested I see Dr Geoff Fotheringham, who had  been my niece’s specialist and whom  I had met briefly during her  illness.  According to her, he was  ”the best surgeon ever!”

I  made the appointment to see him in the last week of January 2005.   He listened to my  story and without examining me, suggested I book myself into  hospital for a Haemorroidectomy.  When I asked if  he wasn’t going to examine me, he said “no, I know its embarassing and  painful and I’ll have a good look while you’re under anaesthetic”.   I didn’t even think to question him at the time.   I was a bit  nervous, because I know its a painful op, but I was also keen to fix the  problem.  I went into hospital on the 2nd February and blow me down, I  started to get what I thought was a dry throat but what soon became a  very sore throat and Della tried to convince me to cancel the  surgery.  She said she had a bad feeling about it.  I said no  because I had psyched myself up for it and wanted to get it over  with.

I  went in at about 6 o’clock that evening and when Fothers came to me in theatre  and took my hand, I said “I hope I’m not wasting your time here … I feel  fine”.  He said “nothing is ever a waste of time”.  (He told  me some time later that  he knew when we first met and I explained my symptons  to  him what he was going to find).  When I came round after the  surgery, I realised that I wasn’t in any pain and thought, well that was  easy.  All I could feel was a big wad of cotton wool.   A short while later, Dr Fothers did his rounds and I asked him why I wasn’t in  any pain and what was going on.  He said “You didn’t need the  surgery – get some rest” and left.  Fothers is not the kind of doctor you  question or mess around with – he’s stern and pretty forbidding, with red hair  and a red beard and a temper to match his  colouring.  I thought “What????” but knowing him, thought oh well,  he’ll talk to me when he has time  tomorrow.  Della, however, doesn’t like being left hanging, so  she followed him into the corridor and asked what was going  on?  After asking her who she was and how old she was, riling her up  even more, he said “your mom has anal canal cancer. She’ll need  a massive op and will end up with a permanent colostomy.  I did a  biopsy to confirm my findings but it’s definitely not just piles.  Now,  you can’t tell your mom because the shock will be too much for her straight  after the anaesthetic, so be here at 7.00 tomorrow morning and we’ll tell her  together then” and off he  went!

Imagine  her shock.  My poor child came back into the ward and had to put on a  brave face and to tell you the truth, she succeeded (I suppose I was still  drugged because under normal circumstances, I know every emotion on her little  face).  When my two girls said they were leaving about 10  minutes later, I thought “why are they leaving so  early?” but I wasn’t at all suspicious at that  stage.  Tracy, my eldest, had realised something was wrong and Della  told her as they left what Fothers had  said.  Oh, how I’ve wished since that night that I could have been there  to hold them tight and console  them – it must have been so dreadful for them and they must have felt so alone.   I’m all they’ve got in life, no grandparents and no father and to lose  me would be inconceivable to them.

Sometime during the night,  the night sister came to chat because I couldn’t sleep and she told me not to  worry, once we had the biopsy result we would know what we were dealing  with.  I was shocked and said “what biopsy?” and she said “Oh, you didn’t  know” and left before I could get anything more  out of her.  Obviously, now I was worried and didn’t  sleep at all that night, my sore throat aggravating me as well.   When my girls arrived at 7.00 the next morning – 7 o’clock – I knew something was up.  They’re late  risers and getting up so early had to be some sort of “special”  occasion.  While they sat talking to me, I complained about my sore  throat and said, “there can’t be anything worse than a sore throat”.  At that moment Dr Fothers walked into the ward and, without closing the curtains around  me, said “I’ve got something to tell you” and  proceeded to say exactly what he had said to Della the night before,  just in a little more  detail.  Just like that!!  I didn’t realise I was holding my breath until it  left my throat in a kind of sob. My girls were both crying and I was  completely gobsmacked – I felt like looking behind me to see who he was  talking to!  In an attempt at  humour (which I know I use to hide my  feelings), I said, “Well, that’s definitely worse than a sore  throat!”

It worked a bit I  think.  Everybody took a breath and we were able to talk to him.   When he asked if I was OK, all I could say was “Thank God it’s not one  of my girls”.   I really felt odd and told him I’d believe  it was cancer when I saw the biopsy  result and he said “I’m absolutely sure Gail”.   I said I’ll wait.  He  explained that it was called “Squamous Cell Carcinoma” and was very slow  growing, but lethal if left untreated.  Della asked him what would  happen if I didn’t have the op and he said, “she’ll die”.  Whew – I’m definately not ready for that yet, I  thought!!

He left then and the girls and I just looked at  one another in absolute shock – I mean, what can you say at a time like  that?  Nobody really knows the right thing to say or what do do for that  matter.  We cried; I comforted  them, reassured them that it was surely a mistake, telling them I’d  always be around for them – I was far too healthy and beautiful to die – I tried to make them  smile.  Tracy tried to put on a brave face for my sake – Della cried and  held onto me like her life depended on it.  I felt  numb.

A  couple of minutes later, the sister came into the ward and asked to see  the girls in private – I couldn’t believe they were leaving me alone at a time like that.  I thought “typical hospital staff – they’re so  used to telling people the worst kind of news, they’ve become completely  insensitive”.   It turned out though that Dr Fothers wanted to see them in his rooms to  explain in more detail what was going to happen, because he said I would have  questions once the shock had worn off and they needed to be able to answer  them.  Della sobbed her way through his  explanations, but Tracy managed to stay a bit more clear-headed and  focused thank goodness because he was right …  I had tons of questions needing answering once the numbness wore  off.

While they were gone,  I lay looking out the window, trying to comprehend what I’d just  been told and finding myself completely unable to.  I didn’t want to keen and cry like you see in the  movies.  I wanted to be be strong emotionally and physically.   I watched the birds and thought “but everything seems so normal –  how is is possible that everything can  change so suddenly – literally, in the blink of an  eye? I touched my well-toned tummy and wondered what  the surgery would do to me and how I could possibly live with a  bag?  I had no idea how they looked or functioned, all I knew was  that I was going to be a freak.  Why  would I get cancer?  I was so fit and strong …I had exercised my whole life, even taking  part in aerobic and strength competitions.  For heavens sake, I could do  75 push-ups and 66 sit-ups in a minute – no way could I have this horrible  disease.  I had eaten properly my whole life and my weight is still the  same today as it was when I was a teenager.  What had I done to cause  this?  Was I being punished for something?  My mind instantly went back to my rape at 15  years old and I wondered if that had caused it.  Stupid huh … but the  mind does strange things to you.

The girls came back in, seemingly more composed and I was  discharged shortly thereafter.  Della  was driving me home and were were talking quite calmly, when my  sister-in-law phoned to ask how I was  after the piles op … well, it was like a floodgate just opened as I tried to  tell her what Dr Fothers had said. The shock in her voice was so palpable and  her fear of the Big C so real … I heard in her voice that she thought I was  going to die. Then the trauma just continued – I had to tell my boss of  18 years, who could barely contain himself.  I wanted to talk to my mom,  but she was suffering from senile dementia and couldn’t remember one thing  from the next, never mind absorb news like that.  I’d never needed her  more and she couldn’t help me.

We  arrived home and while holding on tightly  to my beloved animals, I told my housekeeper, who has been with me  for over 10 years.  She rocked  me while wailing out her sorry’s.  Friends started arriving at the house and with every  arrival, the tears came till my head hurt and my eyes were puffed up like  Mohammed Ali had landed some whopping heavyweight punches to my face.  We  were sitting on the patio when Tracy took my hand and said, “Mom, you’re such  a strong and brave woman – I know you can do this if you have to”.  It  calmed me a lot because I realised that that was exactly what I had to be – a  mother, strong and brave so that I didn’t make it even worse for my girls and  in so doing, I would force myself to cope with whatever came my  way.  My girls needed me to lead by example.  We agreed that we  wouldn’t let panic set in until we had the result of the biopsy (five  days away) and then we would deal with whatever we had to.  I  had what I would consider a normal  weekend – I kept telling myself all the time that Geoff was  mistaken – he wasn’t infallible – he could be wrong! Oh please, let  him be wrong!!

Walking into Dr Fothers’ rooms the next  Tuesday, we knew at first glance  that he hadn’t been wrong.  We sat and listened as he explained in detail  the extent of the surgery (called “Abdomino Perineal Resection”) and we asked  him about other forms of treatment.  He said I could have a temporary  colostomy, followed by extensive chemo and radiation for 6 months.  The  downside of that would be that the radiation is so severe it would probably  burn the sphincter muscle so badly that I would need a permanent colostomy  anyway.  He also explained the other damage the burning would wreak on my  pelvic area and my little girl  parts – I honestly don’t know which option sounded worse.  I couldn’t  believe that this unknown (to me at  least) type of cancer, could result in  such permanent damage to your body.  I felt distraught – I tuned out.  How could they want to do this to  my body?  Everybody would know – everybody would be able to see  the bag.  My family and friends would be revolted and what about my  colleagues at work?  Would they even be able to work with me?  Would  a man ever love me again?  Why had  my body let me down so badly?  I just wanted to get out of there and run as far away as  possible.

We left  Geoff with a promise to make a  decision soon and headed straight to Sandton Oncology, where the girls had made an appointment for  me with an oncologist to get a second opinion.  As we were a bit early,  we went for breakfast and chatted about this and that like a perfectly normal  family.  How does one do that so easily?  Is it a defence mechanism  against the terrible hurt you’re feeling?  Whatever it is, it  helps!

At  Sandton Oncology, the doctor had exactly the same opinion as Dr Fothers,  but felt I should try the treatment  route and not have the severe, permanent surgery.  He admitted  that the treatment alone might not work, but insisted it was a better  option.  Obviously cutting out the growth was a better risk but  did I want to live with a permanent colostomy, he asked  me?  While we were with him, he took a call on his cellphone from his brother about a hunting trip they  were going on that weekend.  We sat  there gaping, feeling dismissed and unimportant and right then and there began my (mostly  unpleasant) journey with doctors.  I  was so put off oncologists that day – I thought he was cold and heartless and  there was no way I was going to him for any kind of  treatment.  I sometimes wish that I had met Dr Sally Bairstow that  day instead – who knows if things might have turned out  differently?

After a week of soul-searching and reading all I could  about my type of cancer and its treatments, I booked my surgery for the 16th February.  I remembered saying “if I had cancer, I would have it  cut out if I could” so to increase my odds, that’s what I decided to do.   I arrived at Olivedale  Hospital in the late afternoon of Tuesday 15th, where  I was fortunate enough to have a  private ward thanks to the financial help of my boss.  A Stoma Therapist  came to “measure” me for my stoma and suddenly everything became oh so  real and scarrrryyyyyyy.   I broke down and couldn’t stop  crying – I sobbed out all my fear,  anger and desperation.  Della held me and cried with me. – the staff took  turns staying with us and trying to find words  of comfort.  Nothing helped – I  wanted to die from sheer fear!

They gave me that  stuff to clean out the colon  and even though I was uncomfortable and  spending some quality bonding time in the loo, I actually relished the  fact that I could go to the toilet by  myself.  After tomorrow, who knew what my circumstances would  be.  I had a sleepless night, with lots of sms’s from my darling girls  telling me how much I meant to them.  The night sister, Annelize, who was on duty from that  night through to when I left, helped by sitting with me and talking me through  my fears (like she did so many nights to come).  I think she was on  duty that  particular night to help me find my strength and courage and  when she left me, I knew I was capable of enduring the surgery and  recovering.

They  fetched me mid-morning on Wednesday, February 16th and I was still sms’ing  drug-induced garbage on my way to the theatre.  The op lasted 5 hours and  when I came around in intensive care, oh  boy … I knew I’d had major surgery.  The pain was excrutiating  and made even more so by the fact  that I had internal bleeding (a haematoma) which lasted the whole night  until they took me back for emergency surgery the next  morning. I felt much better after that and was allowed back to my ward on  the Friday.  The recovery wasn’t easy, but I was fit and strong and felt  better every day.  Getting out of bed wasn’t the big deal I thought it  would be and I felt all my previous physical strength coming back daily.   The staff were marvellous and I had so many visitors, I seemed to never be  alone.  Monday 21st was not a good day – first my boss arrived to visit and when I saw him, I  started blubbering like an idiot, which made him cry.  Then during  visiting hours Dr Fothers  arrived to tell us that the cancer had moved into the lymph nodes  of the right groin, so I would have to have radiation.  My first question was “do I have to have chemo?” to  which he said no.  Relief washed over me because I thought radiation would be a lot  easier … humph … little did I  know!

I  was discharged ten days after the op, walked to the car unaided and Della  drove me home to our animals.  I  healed quickly except for the restriction of no bending or sitting for 2  months while my back-end healed.   My biggest challenge was learning how to deal with the colostomy  bag, a challenge that persists today despite my  brain knowing that it saves my life, one day at a time … my heart wants it  gone and I’m envious anytime I meet someone who has theirs  reversed.  At my first post-op visit to Dr Fothers, I cried  because I was so embarassed that the bag wasn’t clean when he examined me and  he told me that day “don’t you ever be embarassed – you can’t control  this and you’re still a  beautiful woman”.  Oh – how  that helped my state of mind and made me  realise that I was still the same person – just more flawed than  before.

There  were no support groups for anal canal cancer and the only people to talk to  were the Stoma Therapists, whose job it is to teach you how  to change your bags and clean your stoma.  They do a great job,  but I desperately wanted to talk to someone else who actually was living with  a colostomy … I’ve only recently found that, four and a half years  later.

I was in  good spirits and was looked after with devotion by Della, who lives with me  and showers me with love.  She did everything for me … shaved and  creamed my legs, gave me pedicures, went up and down the stairs a hundred  times a day to fetch and carry stuff, cooked, looked after the animals and  made me a divine bed on the couch downstairs in front of the TV, where  I lay in state when visitors  came.  I felt cherished and loved and not at all scared of the radiation that still lay ahead.  I  felt strong and didn’t feel sad or miserable – I got on with it,  walked every night with Della and our dogs and kept myself active and  busy.

I  went back to work after 4 weeks at home.  In April, once all the wounds  had healed, I started my 32 daily  treatments of radiation with  what I thought was a strong heart and lots of courage.  But  radiation isn’t for sissies, I can tell you.  For reasons unknown to  me, as soon as the pinging started,  I began to cry and was sent off to speak to the  practice therapist, Elma.  We  spoke about the uphill battle I still had ahead of me and explored  some issues from my past.  Every day I  would go to work with Della, go off to radiation at lunchtime, then go home  and rest.  April proved to be a tough month for us – on the 17th, our beautiful 15 year  old ginger cross-persian died suddenly of a cardiac stroke and Della’s little  Maltese was showing signs of Cushings  Disease.

But somehow you persevere,  and by 4th June (my birthday),  the radiation was over.  I had suffered severe burning to my groin,  pelvic area and back-end and that was extremely debilitating.  I lay  on my bed with no clothes on my bottom half, wondering how much more life  could suck??!!  But as suddenly as it had begun, it was over. The  burns began to heal and on my surprise 54th birthday party, I was able to  wear smart black slacks for the first time and walk like a normal  person.   What a wonderful birthday I had, celebrating with the  people closest to me.  We  danced and made silly speeches and just  let our hair down.  Everybody  seemed to be filled with love and relief that I was still my old self  and not some sickly little old lady –  also respect, because  I believe that people gain courage from us when we fight such a hard  battle.   A good friend  asked me recently while going through her own anal canal radiation treatment,  ”how long will this burning last” and I couldn’t remember!  How  marvellous is the human spirit that we endure  such pain and just so easily forget?

By 25 October 2005, our  little Zoya gave in to her fight with Cushings, a devastating day in our  family and a great loss for Della.  She still hasn’t fully recovered and  misses her every day, but she now has a wonderful, funny, clever and  entertaining little angel called Lily who has brought new love and laughter  to our home.

The after-effects of the radiation still remain today  but by far the hardest thing for me has been learning to adjust to life  with a colostomy.  Always proud of my body, now I have to see it in a  whole new light. If you don’t have one, you don’t know how it dominates  your life, but I keep reminding myself that at least I have a life to  live.  The journey has been  hard, but my family stepped up and took amazing care of me.  I joined the  Buddie Group at Sandton Oncology and met the most wonderful people (although  none with my type of cancer or with a colostomy).  I met Sandy,  who also has anal canal cancer, at the group in December  2008 and we bonded instantly.  She was about to start her treatment  and Della and I helped and advised her as much as we could.  She  says Della and I were like her angels, sent to help and inspire her never to  give up.

My aim is to  take the loneliness and stigma out of this disease … I found it hard at the time to tell people what type of cancer I had – people don’t like  to talk about the nether regions of their bodies!  When I first told an  associate of my diagnosis, he said, “Oh, I thought only gay guys got that  cancer!”  Another said something even worse.  I was so embarassed I  started telling people I had colon cancer.  I actually said at one time  ”I wish I rather had breast cancer – there’s so much support for it and nobody  makes nasty comments”.  Little did I know what was still to  come.

In  November of 2007 I found a little lump in my left breast, rushed off to see Dr  Fothers and he assured me it was “nothing”.  He wasn’t himself that  day and I left feeling unhappy and unsure of his diagnosis.   Could he finally be proven wrong – last time I  had prayed for him to be wrong in his diagnosis – this time I wanted him  to be right – no more cancer please! I asked my friend and  neighbour, Dr Clare Sim, to feel the lump and she said she wasn’t happy with  it at all and I should ask Dr Sally at my next visit in two weeks  time. Sally herself wasn’t unduly worried but suggested that since  I needed some tummy x-rays done anyway, I should let them check the boob while I was  there.  A wonderful doctor, Sandy Wise, at Sandton Clinic Radiology did a  scan, a mammogram and yes, a biopsy and guess what – another cancer!  A  second primary – luckily not HER2, the bad one.   When Sally gave my  girls and I the news, I again felt completely numb.  I felt like I was  walking around in a dream, a nightmare actually.   Noooooooo I wanted to yell – not again – I  can’t do this again!!

Everyone  kept saying things like “you’ve had so much worse, this is nothing” or “this  will be a walk in the park”.  I wanted to scream “How do you know – do  you have to do this – again!!!” I was so mad that it was happening all over  again and with a brand new cancer.  I didn’t have nearly the level of  support I’d had the first time and that hurt.  Once you’ve had cancer,  you’re vigilant, very aware of your body.  You’re mentally prepared  that it might move and you know the path it will take if it does.  But  getting a second cancer is such a shock – I actually didn’t know people got  more than one primary … you live and learn hey?  I was so busy at work, packing up and moving  offices, that I switched my mind off and concentrated on getting through that  first and although Della nagged me to book my surgery, I kept saying I was too  busy. It was a tiny lump and I thought it could certainly wait a couple  of weeks.

I  booked the surgery for the 10th December 2007 with Dr Rogaly, a doctor experienced in breast surgery.    Although Dr Fothers has been copied on all the results, he’s never been in  touch with me and I went to Dr Rogaly because Dr Sally felt he was  more experienced with lumpectomies.  It still hurts that Dr Fothers never  just gave me a call … I had so much blind faith in him and yes,  this proved he is in fact fallible!

Dr Rogaly told  me that he wouldn’t know until we were in surgery whether there was spread  and whether he would have to do a  mastectomy, but I felt quite confident that I would retain my  breast.  It was an easy op,  with no spread to the lymph nodes.  I would need another 35 radiations,  however, as there were cancer cells in the tissue around the lump they had  removed.   Oh hell no … all that burning again!  But it  wasn’t nearly as bad and it was in fact a walk in the park after all.

Besides the  colostomy, the worst thing I’ve had to deal with has been the sudden  onset of menopause.  As soon as I was diagnosed with breast cancer, I was  taken off all hormone replacement therapy and within a month, I was  having hot flushes.  Sometimes I have them one after the other and I don’t ever get a good night’s sleep.  The flushes seem to drain  the very life out of you and leave you feeling like a wrung-out  dishcloth.  I’ve also got big problems with bulging discs in my back as  well as inflammation in my right hip.  I’m battling to do any exercise,  never mind what I love most, work in my garden.  The AP Resection  combined with radiation has left lots of permanent damage to the bowel and  bladder, but you know, most days I don’t even remember that its the cancer  that caused it, I just think “God, I’m getting old!!”

When I was  asked to join the Buddie Group, I was dubious I must say.  I thought “I  don’t need to sit and talk about what I’ve been through” but I was never more wrong!!  The first meeting consisted of a bunch of complete strangers sharing their stories and crying for 3 hours and I’ve met some wonderful people, who’ve all touched my life in one way or another.

Recently, Dr Linda van Zyl suggested we start an Anal Cancer Support Group (the first in JHB) as the  after-effects of the treatment is so hectic – we’ve currently got 8 woman in  the group, two of us have had the surgery, the others are hoping to have  beaten the disease with a combination of chemo and radiation.  They are  all wonderful and sharing our cancer stories, our daily trials and tribulations no matter how  embarrassing, is heart warming and special … as we recruit new people, I  know we’re going to be of enormous help to  them.

In the grand scheme  of things, I’m lucky.  Neither of my cancers are the really “bad” ones  (if there’s such a thing) and after all the ops and treatments, I’m in full  remission.  My family and animals are healthy and happy.  Della and I went on holiday in January 2006 and I put on a bikini (YES!) and swam in  the sea like I used to, getting smacked around  by the waves and loving it.  I still work a full day, walk our dogs every day and love singing and  dancing.  Life goes on, and things are back to normal – just  a different normal.  I  never wake up and think about the cancers, but I confess that one of my first thoughts is  ”what is my tummy going to do today?”  I’m very vigilant about  my check ups and watch out for any lumps or  changes to my body.  Cancer is a guest (albeit invited) in my life  and it has had to adjust to my lifestyle  - I refuse to change my life for it.  I’ve tamed a feral cat that lived  outside for 3 years and she now lives in our home with us.  I  continue to fight for animals in distress and I try to inspire good in people.  If  I can help someone going through cancer treatment, I’m there like a  shot.  I try to concentrate on the good things in life and never dwell on  the bad.

I still don’t  have a GP, because I never get sick. I’m still loved,  cherished and appreciated by my family and friends, maybe even a bit more than  before.  Nobody knows I have a bag and those that do are not repulsed by  it like I thought they would be.  I occasionally poep in public or in  meetings, and we all just laugh and acknowledge that this is the new me … a  me that has regained her confidence and holds her head up high.

This  is dedicated to my beautiful daughters, without whom my life would be  pointless. We have stood together through  thick and thin, sickness and health, happiness and extreme sadness, for three  decades. Their love sustains me – their support is my  strength.