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.

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Della Silberman | Anal Canal Cancer

Della Silberman – caregiver for mother Gail. Both are very active buddies and have helped many patients. The story of a mother and daughter’s struggle with cancer It all began in January 2005. Mom had been to the GP often for the same complaint – bleeding haemorrhoids, but she never checked the area, just prescribed...

Della Silberman – caregiver for mother Gail. Both are very active buddies and have helped many patients.

The story of a mother and daughter’s struggle with cancer

It all began in January 2005. Mom had been to the GP often for the same complaint – bleeding haemorrhoids, but she never checked the area, just prescribed cream and sent her packing. On that fateful day, mom insisted that the GP actually take a look and see what was going on as the bleeding had become much worse and she was constantly bloated and in pain. The doctors’ diagnosis was “thrombosed piles” and she suggested Mom pay a visit to Dr Fotheringham at Olivedale Clinic to have them removed by laser – “easy peasy” she said. On consulting him, he said that he would take her into theatre and do a haemorrhoidectomy – he didn’t examine her at the consultation as he said he would do that in theatre.

I remember having a funny, anxious feeling about the surgery. I tried to come up with all kinds of excuses as to why she shouldn’t go in on that particular day – her throat was sore so she shouldn’t have an anesthetic; we were too busy at work … but mom was adamant. We waited the whole day for the surgery and eventually Dr Fotheringham took her in at about 6pm on 2 February 2005. 20 minutes later she was back from surgery and the haemorrhoidectomy had not been done. When Dr Fothers came round at 8pm that evening all he said was he hadn’t performed the op but would see mom in the morning. We looked at him in surprise – what??? – then he just walked out of the ward. Oh no, that wasn’t good enough for me so I followed him out and asked what was going on? For those of you that don’t know Dr Fothers, he is a very intimidating man with red hair and a red beard and everyone is terrified of him. He wouldn’t even answer me at first – he wanted to know who I was and how old I was. I told him I was her daughter and although I looked young, I was 31 years old and wanted to know was what was going on. Well, he laid it out in simple terms – he said that mom had anal canal cancer that required major surgery which would leave her with a permanent colostomy. Talk about shock – I think I must have just stared at him with my mouth hanging open. I couldn’t even think of what to say, but before I could answer, he instructed me not to say anything to her that night as the shock could be fatal after an anesthetic. He told me that I should be at the hospital at 7.00 the next morning to be with mom when he told her – then he left.

That was the night my whole world fell apart. I went back into the ward and tried to put a smile on my face and pretend all was ok but only managed for about 15 minutes, after which time I said I have to go home to sort the animals out. My sister and I left the hospital and on the way out I told her what Dr Fothers had said. We were both absolutely floored and worst of all, we didn’t have our mom to lean on and ask for advice – suddenly, we were on our own.

I drove home in a state of shock, tears steaming down my face so I could hardly see where I was driving. I was hiccupping with tears and I felt as though I’d been punched in my tummy. Going round and round in my head was that I didn’t know how the colostomy bags worked; if they were big or small; where they fit and most of all, the scare of the big C which had entered our lives. I spent the night vomiting from sheer shock and drawing comfort from my most precious animals as they never left my side, knowing something was up because I was so upset.

The next morning I was at the hospital at 7.00am and shortly thereafter my sister walked in. By then I think my mom knew something was up because why would we both be at the hospital so early and especially my sister, who had a very difficult boss and lived quite far from the hospital. Dr Fothers eventually arrived at 08h15 and when mom said “hi doc, what’s happening?” he stood at the bottom of the bed and said “sorry but you have anal canal cancer, we will have to remove your rectum and anus and give you a permanent colostomy”. Mom lay there as if to say “you are joking” until she looked at my sister and I and saw that we were crying and realised we already knew. She said “OK, I’ll wait for the biopsy results” and he assured her that he wouldn’t be telling her this if he wasn’t sure. She just nodded. After spending a sleepless night thinking about the surgery, my first question was “what if we don’t do anything”? He answered “she’ll die”. Dr Fothers left the ward a couple of minutes later with an instruction for mom to be at his rooms at 9.00 o’clock the following Tuesday morning.

A couple of minutes later, one of the sisters came to fetch my sister and I to take us to his rooms and we had to walk away and leave mom alone. She looked small and forlorn and I just wanted to hold her tightly and make this all go away. Dr Fothers wanted to make it clear to me what would happen if mom didn’t have the surgery and also give us all the details we needed so that when we got home and mom had questions, we could answer them. I have no recollection of what he actually said that day. I was too hysterical but thank goodness my sister was there and able to have a coherent conversation with him. On the way home my Aunt phoned to see how mom was; Mom told her the diagnosis and then the tears started to flow. I don’t think I have ever been so terrified in my life. We had to wait 5 days for the result, which is stressful enough to kill anyone. I knew deep down in my heart that he would not have told us what he had found unless he was 100% sure. I was in no doubt that when we got the results they would be positive for cancer.

Those five days felt like the longest of our lives – I couldn’t stop crying no matter how hard I tried. I phoned the doctor that had told mom it was haemorrhoids to ask for tranquilisers and she immediately went on the defensive and said she couldn’t have known it was so serious. We never heard from her again. I felt like I had to try to be strong for mom, but my heart was breaking at what she would have to face. She tried to be positive and cheerful and kept saying she wouldn’t worry until we actually had the results, but I think she also knew deep down in her heart that Dr Fothers wouldn’t have told us what he did if he wasn’t sure. Tuesday couldn’t come soon enough but I also dreaded it with every fibre of my being.

We knew the minute we walked into his rooms that the results were positive just by looking at his face. By then we were all calm and were able to have a proper discussion as to the surgery or alternative chemo / radiation treatment and we left his rooms with a promise to make a decision soon. My sister and I had asked mom to see an oncologist for alternative treatment as the surgery was so drastic. She reluctantly agreed (she’s been terrified of chemo since her niece battled breast cancer) and we had an appointment to see him after we had seen Dr Fothers for the biopsy results. Between the two doctors visits we all went and had breakfast and watched the world passing by as though we didn’t have a care in the world.

Eventually it was time to see the oncologist, who was so rude that he took a call from his brother-in-law on his cellphone and sat chatting about their upcoming hunting trip while we were sitting in front of him. I was absolutely horrified – did he not understand what was happening to us? He examined mom and told her about very aggressive treatment they would do without surgery (but she would have to have a temporary colostomy), told us to decide which route we would follow and ushered us out of his rooms.

After some very careful soul searching, mom decided on the surgery route and booked the op for the 16th February 2005. If I thought I was terrified before I had no idea what was coming. I can remember the days leading up to the surgery; I was incapable of doing my job; it was impossible to make small talk about irrelevant things but even more impossible to speak about what was really on your mind. None of my friends knew what I was feeling because cancer hadn’t touched their lives. All I wanted to do was cry and beg God to let this all be a cruel joke. As the surgery neared, I would be driving home from work and look at other people in their cars, singing along to music, smiling or just being normal and I would think ”how dare you be happy when we are so unhappy”.

D-day finally came and we booked into Olivedale again. They prepped mom and she tried to mentally prepare herself for the next day. When they came to take mom to surgery at about 12pm, they allowed me to into pre-theatre with her to wait until it was time for her to go into theatre (the op would take about 4 hours so I was in for a long wait). I don’t remember if we spoke at all – mom was in a happy, drugged state and I was too scared to say anything in case I told her how scared I was. Suddenly it was time and as I watched them wheel her into theatre all I could think was “how are we going to cope with this?” I never for one moment thought she wouldn’t make the surgery – I just knew she ‘d come through it!

I spent the next four hours chain smoking and drinking coffee with friends and family coming and going. They had said that mom would go straight into ICU so eventually when my sister arrived, we just sat outside the ICU and waited. Eventually I heard crying and knew at once that it was my mom. They were wheeling her out of theatre and she was in so much pain it just broke my heart. They took her into ICU but wouldn’t let us in. At this stage I was ready to kill someone; did they not understand that my mom needed her family with her?

Eventually the ICU sister allowed us in for five minutes and there was our mom, pipes and tubes coming out of everywhere, looking yellow and gaunt. All she kept saying was that she thought something was wrong because she was in too much pain. I waited for Dr Fothers, who made his rounds at 8pm and told him that something was not right – mom doesn’t complain for nothing! He asked me if I realized the extent of the surgery and said that of course she would be in pain. I had to leave shortly thereafter and wondered as I drove home how on earth mom would get through the night.

When I got to the hospital the next morning the ICU sister told me that mom had been bleeding through the cut the whole night and would need to go back into theatre for emergency surgery. I was so angry because she had been left there the whole night in agony when something could have been done the night before. Mom was taken back to theatre at 11am on 17th February and they quarterised the bleeders. After she came out of theatre she was a hundred times better but they had to give her quite a lot of blood because of the blood she had lost the night before. Mom spent two days in the ICU and was then taken back to her ward. I can remember counting down the days until she would come home but was terrified at the same time because how was I going to look after her and go to work. Three days later another blow came when Dr Fothers came to tell us that the cancer has spread into the lymph nodes in the groin and that mom would need extensive radiation. I could just not believe what was happening. Mom had one very bad day with vomiting and extreme pain and that same day my little dog Zoya took ill. I had to take her to the vet where they admitted her for the weekend. I completely fell apart after this – it was the first time my baby had to stay in hospital and allI kept thinking was why us; what have we done to deserve this …?

By this time I was absolutely exhausted with rushing to work, rushing home, walking and feeding the dogs and rushing back to the hospital in the evenings. My nerves were frazzled and I was distraught. I wasn’t eating and noticed that I was losing weight – a couple of months later, my boss’ wife told me I looked like Morticia Adams! After 10 days mom was released from hospital because she was doing so well. I couldn’t wait to get her home, tucked up in bed where I could help her get better, but little did we know the long road still ahead of us. I love taking care of people and all my caregiving and maternal instincts kicked in – I wanted to do everything for mom and make her as comfortable as possible. I wanted to cook her favorite foods (not that she could eat much) and hated leaving her alone all day. I found a strength in myself I didn’t know I had and mom and I pushed ahead with positivity, knowing that we could fight this together. It was hard going, getting up early to get mom some breakfast and making sure she had what she needed upstairs so as to minimise the amount of times she would have to go up and down the stairs. I would get the animals fed and myself dressed, then rush off to work and get home at around 5.00. About a week after getting out of hospital, mom started coming walking with me and the dogs again, then she would rest on the couch while I fed the dogs and cooked dinner. Then shower time … I would wash her legs, and feet (she wasn’t allowed to bend or sit at all for 2 months), dry them off and put cream on them. On weekends, I would give her a pedicure – I loved spoiling her and showing her how much I love her.

Mom was only allowed to either lie down or stand and you can imagine how uncomfortable she was all the time. She was healing like a star and had constant visitors which helped her frame of mind. Finally, 6 weeks after the op the day came for radiation to start. One every day for 32 sessions. All I kept thinking was how is she going to get through this. Lying there and being burnt on a daily basis, but her will to survive for her children was stronger than anything else. The radiation definitely took its toll, ruined her bowel and burnt the living daylights out of her. I marked every day off on the calendar and eventually we were counting down the last five. And finally it was finished! I was so excited because even though mom was still ill, the treatment was over and she could just focus on getting well again and adjusting to her new lifestyle of living with a colostomy.

It was at this time that my little dog, Zoya – aged 6, started showing signs of not being well, but nothing we could put our finger on. She was gaining weight and eating with more gusto than ever before. She had always raced up and down the stairs like a lunatic, but now when I got home in the evenings, she would wait on the top landing and shout for me to come and say hello. We thought she was just busy hanging out with her granny and had become too lazy to come all the way done when I could come up! We also noticed that even though she still nagged to go walking every day, she became tired and wasn’t able to keep up. Still we put it down to her being a bit overweight and it was also very hot – we started walking later in the evening when it was cooler and she particularly loved it when there was a bit of a breeze that blew her long ears back!. She still loved walking, but her body seemed to be giving out on her. After many visits and discussions with our wonderful vet, we thought it was time to run lots of tests. This is where our next nightmare began.

We visited our vet and he suggested we test for Thyroid problems first. Those tests all came back negative. He had mentioned that if it was not Thyroid it could very possibly be Cushings but in his words ”let’s cross that bridge if we get there”. Unfortunately we got there – quickly – she was diagnosed with full blown Cushings. I was devastated at the result but he assured me that lots of dogs with Cushings lead perfectly normal lives once their cotisol levels are under control. I remember mom saying “it’s ok, at least now we know what the problem is and we can treat it”. I still felt very emotional and distraught because I had a sinking feeling that it was not going to be that easy. Her weight escalated to 9.1lkg’s. That would certainly explain the tiredness and discomfort. She was battling to breathe as she was carrying so much extra weight and was hungry all the time.

So here began the medication – all trial and error. Unfortunately the only medication that treats Cushings is a tablet called Lysodren which contains DDT (highly toxic and dangerous). The poor little thing was stiff all the time and hobbled along. She could no longer climb the stairs so either grannie or I were carrying her up and down all the time. I was very loathe to put her on the medication but wanted to do everything I could to save her. She started to vomit up water and bile at 2am on Tuesday 25th October and things went downhill from there. She was getting weaker by the minute and was unable to even sit up for long. She vomited at 6am again and we knew she was in terrible trouble. Her little tongue was ice cold and her body felt hard and tense and her head was twitching and pulling to the left – we thought for sure she had had a stroke or something. While I quickly got ready to get her to the doctor she just lay on the bed with her grannie looking at us all the time but too weak to do anything else. I left her with our trusted vet and spoke to him a few times during the morning about her condition. Mom and I went over and over what we should do and cried like babies at the prospect of putting her down. Our vet suggested we come through as soon as we could so we could be with her – my sister Tracy also came to be with her. When we were shown into the hospital she was fast asleep. This was another sign for me because all the other animals in the hospital were barking and crying but my little baby was too sick to be bothered. When she saw us she wagged her beautiful little tail but couldn’t even get up.

I took her out of the cage and just held her. Her little body was ice cold to the touch and the life was gone from her eyes. I couldn’t believe I had made her lie there all morning feeling so cold and sick – now I needed to make the decision to put her out of her pain. We all spoke to her, told her how much we loved her, that it was ok to go and that all the other animals we had loved and lost over the years would all be waiting for her. On our OK, our vet (who was almost in tears) depressed the plunger and before our eyes, our wonderful little dog left us. I was absolutely devastated … I felt like my whole world was falling apart and I could do nothing to put it back together. We didn’t want to get another pup but our other dog was lonely and missed her big sister so much, that we knew we couldn’t hold out too long. Once we were feeling stronger, we got a little cross-collie pup … OMG, I didn’t think I would ever love this little thing but 3 years later she has crept into my heart so much and I Iove her more than words can say.

The last year and a half had been so hard on us and our animals and I just wanted it to end. Everytime something stressed Mom out, I would panic and think the stress was going to cause her cancer to spread – little did I realise what was actually coming our way.

In November 2007 mom found a tiny lump in her breast. Surely this couldn’t be anything again, I kept thinking. Life could not be this cruel to us. But lo and behold it was breast cancer and so we started all over again, and of course so did the tears and the fact that cancer had entered our lives for a second time. All I kept thinking was this is my mom and best friend and how much more can she go through, but her strength is something quite amazing.

Off we went to the surgeon again, this time at Morningside Clinic and he said a lumpectomy would need to be done and the sentinel lymph nodes checked while in theatre. Mom had to sign a form giving permission to remove the breast in the event that things were more complicated when they started the procedure. Surgery was booked for 10 December 2007 and the panic set in again. What if they needed to do a mastectomy; how would mom cope living with a colostomy and no breast. I could not even fathom the thought … I was quite beside myself with fear. Mom seemed pretty relaxed – I think she’d been through so much already that she felt numb!

When mom came out of surgery the first thing she said was “do I still have boobs”. Luckily the answer was yes. They had done the lumpectomy and the lymphs were clear. Yay – some good news for a change. Now all we had to focus on was getting mom better again. A few days later the surgeon phoned to say that there were still some cancerous cells that they had not managed to get which showed up in the biopsy and we needed to see Mom’s oncologist. She was booked for another 35 radiation sessions (1 per day) and it all began again. Luckily she did not burn as badly this time but the radiation took everything out of her this time … she was absolutely exhausted.

For me these past four and a half years have been exhausting, frightening and enlightening (mostly because I’ve learnt so much about my own strengths, but also because I’ve been fortunate enough to have such a bonded family who stick together no matter what). I think that when cancer has touched someone you love, you live with the fear of it returning every day. It has definitely helped being a Buddie and being able to meet and guide people in the same situation – the biggest draw for me has been that its a forum where you can speak freely about your fears as much as about what you’ve learnt - knowing that I’m not alone as a caregiver.

I have never been more proud and honoured to be my mother’s daughter and will be by her side always and forever.

Written by: Della Silberman

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