Cancer Alliance Stigma Survey

Cancer stigma is a great problem in South Africa, it touches all groups, ages and genders and impacts cancer patients daily.

With our current survey we aim to gain more information and insight into the role of cancer stigma in our communities.

- Cancer Alliance Stigma Survey -

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Gail Silberman | Colon Cancer

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...

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.

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