Live, Love, Laugh and Don’t Give Up

Helen Barnard shared her story recently at the 12 Apostles Cuppa Event:

Celebrating my cousins birthday during chemo
Helen celebrating her cousin’s birthday during chemo…

In 2009 my gynaecologist suggested I have a total hysterectomy, and to go on hormone replacement tablets.

In Feb 2011 they detected a lump in my left breast when I went for my yearly mammogram and they removed it – it was found to be benign.

In Sept 2011 my cousin was diagnosed with breast cancer. Being very close family we were all shocked. We all supported her for the Ithemba walk, but if I look back we did not really know what my cousin was going through or feeling.

In January 2012, I decided to do one of the items on my bucket list – I wanted my motorbike licence. After going to a driving school, with no bike of my own, I eventually received my licence. A very proud 53 year old. Another goal achieved.

My friend Lyn and I used to meet up at the local pub, have our two brandy and cokes and then go off home. This was done diligently every Friday, as Lyn used to work long hours and a Friday night was the only night she felt she had to entertain herself.

At times I did not feel like going, but felt so guilty that I just used to go along so I could see Lyn’s smiling face when entering the pub. She was a quiet person. Never said much, but soon got to know everyone and she came out of her shell.

During our chats she said that she had problems with her neck I eventually convinced her to see a doctor, as the physiotherapist sessions had not helped her. She was then informed that she had cancer (a tumour in her neck) a very rare bone cancer that was only diagnosed from a Professior in Bloemfontein after quite some time. I was shocked.

Not 2 months later, I told her that I had something to tell her – I HAD CANCER – we politely laughed it off and said we were not returning to the local pub, as it was not brandy and coke, but brandy and cancer that the two of us had got.

Lynn
Sharing a special moment with Lyn…

Lyn had a difficult time with chemo, radiation and skin graft. We were due to visit her on a Tuesday night and in the early hours of the morning, we were informed that Lyn had passed away. I missed her as we used to have regular chats re what we both were going through, and the times that we had spent together at the local pub and New Year’s Eve dances (she loved dancing).

At the end of Feb 2012, I went for my yearly mammogram. Once again there appeared to be a suspicion that something was not right.

This had happened so many times previously, so when they called the doctor to come and check it, I was not at all concerned. She was a lovely Indian doctor and her comment to me was “ this time it looks like it is going to be positive.”

My reaction was to say “ok”. They then decided to book me in for a needle biopsy. I got a call from my surgeon at work – his words – my girlie you have cancer. Not even 6 months after my cousins diagnosis (diagnosed 1 March 2012, Grade III Infiltrating Ductal Carcinoma). This cancer starts in a duct then breaks through the duct wall and invades the fatty tissue of the breast. This is the most common one.

I had no reaction. I think I just accepted it. I picked up the phone and politely told my two sons over the phone, which today I don’t think was right, and said I had cancer. My youngest son doesn’t show emotion. That evening we had a family braai. I noticed him standing all alone in the dark and went up to him to ask him whether he was alright. He burst out crying. This was the first time in years that I had seen him break down and cry. It killed me to see him hurting so much. I also informed my sister who cried her eyes out, but I just told her I would be fine.

I had booked to go to Thailand in April, but was advised to have my breast removed immediately. The cancer was aggressive and was advised I start the necessary chemo and radiation. This trip was cancelled immediately.

On 12 March 2012 I was admitted to hospital – my sister right behind me in the theatre, as well as my friend. All people around me at theatre wished me well, with tears around me from my sister and friend. I tried to be strong but the tears rolled slowly down my face. I turned away as I didn’t want them to see how frightened I really was . When I woke up I realised the reality of the situation. My breast was gone, but still nothing. All I could do was be strong. I could not afford to break down. I had a long road ahead. Little did I know how long that road would be.

I recovered quickly and my plastic surgeon came and told me what was in store for me in the future and how she was going to reconstruct the breast. I requested that I had a skin saving reconstruction done. In this way she did not have to use part of my shoulder muscle to build up a new breast. What she did was she put an expander under my skin and every 3 weeks or so I would go and have some liquid injected into a port which would stretch my skin. This would be done until my skin had been stretched until the required size and left like that until 6 – 9 months after radium had been completed. This would give the skin enough time to heal.

I had to wait for about 3 weeks after the breast removal until chemo began. I did not know what to expect. I met with my oncologist who explained that I would have 4 red devil sessions (this was very strong chemo) with three weeks apart, then another 12 weekly sessions of chemo, a break of 3 weeks and then 5 weeks of daily radium sessions. Thereafter I would be put on a tablet for 5 years (Arimidex).

I was told that within the second week after the first red devil session I would begin to lose my hair. Once I experienced the loss of hair, I should go and have it all shaved off, as it becomes very traumatic. My hair had always been healthy, long and very dark.

By the second week I started experiencing the hair loss. It became so bad that I looked like Mo from the 3 Stooges. A bald patch right through the middle with hair only on the sides. When I brushed my hair, it started to come out in bunches. I then decided that I would go and have my hair shaved off by my hairdresser that had cut my hair for
years.

He knew what I was going through and when I sat down with him – his words to me were, “Are you ready for this?” He put his hands through my hair and there and then the hair came out in bunches in his hands. His answer was, “Yes, I can see what you mean, it has to come off.”

He started to shave my hair and slowly the tears rolled down my face. I didn’t sob as I did not want anyone to see what I was going through, but by this time all eyes was on me and people started to come up to me to tell me how brave I was, how they had shaved their hair for their mom, and one woman started to cry. I got up and went to comfort her telling her that I would be fine. That helped me that I had to comfort someone else.

I had my wigs with me – I had purchased them while I still had hair as this helped the lady decide which would be best for me as she could see what I looked like before my hair loss. I had a short wig (bob style) and one that was just like I currently look – long and in layers. My hairdresser was fantastic, and I am thankful to him for his sensitivity to my situation.

My eyebrows and eyelashes also fell out. I attended a Look Good feel Better day. Here they taught you how to put makeup on such as drawing eyebrows, how you had to measure it so it looked the same and in the right place, and line your eyes so that it was not noticeable that you had no eyelashes.

I experienced many funny situations with my wigs, which my friends had many laughs about:

When coming out of the hospital one day, I walked to my car in the howling South Easter. As someone wanted my parking space, I directed him to my car and the next minute I felt my wig blow off into the wind. Well, the man’s face in the car was that of disbelief. He didnt know to react. By that time my cousin had run down the road after my wig!

Another time it was my birthday and we went to The Mount Nelson Hotel for high tea. There was an elderly gentleman serving us and handed me my cup of tea and at that point the wig fell backwards and I was wigless. The faces around me were priceless. He tried to comfort me by saying that I was beautiful with or without a wig. But I told him I was ok, that I was laughing and not crying. Needless to say he did not return.

My two sons took me to lunch one day. We were sitting on a balcony – it became very hot and I asked them if it would be ok if I took the wig off – their replied, “Whatever makes you comfortable mom.” I then took it off which resulted in funny looks around me – people did not know whether to look , whether to smile, or pretend they had not noticed. I just carried on with our lunch of course!

My wigs sometimes looked like a wig and other times you would think it was my normal look. I would confuse friends on a daily basis by never looking the same, wigs changed, bandanas or sometimes just going plain au naturel.

I took strain with the first rounds of chemo – some sessions I could not do within the required period as my blood levels weren’t right, so I had to wait until the following week.

The first time that I could not go for chemo due to my blood levels upset me terribly – I thought I had done something wrong. I soon learned that it was not me. My body had to build itself up. No amount of whatever I would take would help my blood levels.

I would go to chemo on a Wednesday and go back to work on the Monday. Sometimes dragging myself there and feeling so weak still, but knowing that as I was alone and had no partner in life, I could not jeopardize my job with my illness.

My sister (a real Florence Nightingale) would arrive on a Wednesday after work ready to look after me. Here she would cook up a meal and open up all the windows and doors so I did not get nauseous from the smells.

Well chemo had certainly taken its toll. I was tired but pushed myself on, knowing that I had to find light at the end of the tunnel.

I would surround myself with positive people. Some people had the nerve to tell me I was going to die and that chemo would just prolong my life – I cut them out of my life. My support system was great. I did not have to see anyone. Small things like a bbm, text message and phone call helped me get through all of it.

I received a lot of support from a group of people from a Music Group (this group of people would often raise funds for people in need of support – such as cancer). What a support group they proved to be and still are. They laughed and cried with me.

I met so many people during the time that I was under chemotherapy. I knew exactly who the new patients were and would always go over and chat to them and encourage them, even if I knew the news was not good.

They always used to ask me why I was there. They would not believe what I was going through, as I was always laughing. I also always had a wig on. When they said they could not believe I was also ill, I would take my wig off and show my baldness.

I was known as the lady who was always laughing and going to the loo, as the drip made me constantly run off to the ladies. I would have the patients in fits of laughter with all my stories. At times I would nod off due to the chemo, and find a sister waking me up to say that the treatment for the day was finished.

Once I started my weekly sessions I would drive myself to and from chemo – trying at all times to be as independent as possible and not relying on help from others. My normal housework routine continued throughout my illness, and my son would treat me no differently. He believed by treating me as if I weren’t ill, it would give me strength, and I do believe this worked. He never allowed me to let my illness get me down. He would joke with me (even though inwardly I knew he was hurting to see me go through all of this).

In October, once again as a family we did the Ithemba walk, and even though on chemo I managed to do the 5 km.

Ithemba Walk

On a Sunday when going for a drive – I would not have the strength to even get to the car, but I would force myself and when getting to the beach – which was where I would want to be – I would stare out at the ocean with the thought of why me? That thought soon became something of the past. I felt I didn’t have the right to ask the question, but to accept it.

On 31 October 2012 my chemo sessions were completed. I was over the moon. I remember the door opened, and all I could see were balloons. As they came nearer I soon realised that it was my friends. Well it certainly brightened up the whole room. The men in the room could not keep their eyes off the beautiful women, and it brought smiles to all around. What a wonderful sight this was, as well as an amazing feeling that I was loved by these people, who had come to celebrate this special day.

Celebration of end of Chemo
Celebrating after chemo…

People would tell me what I should take that would take cancer away completely – I know everyone meant well – but I do believe that faith in God, as well as having a positive attitude helps.

I changed my Oncologist once I commenced with radium treatment. My new Oncologist took the time to answer all the questions that I never had answers to previously – this made me feel so much more confident in where I was going.

The problem was that I had never had this illness before and never knew what to expect. I needed reassurance of where I was going. The new practice showed concern for me, going out of their way to assure me of their assistance at all times, advising me of who I was seeing each week and giving me the confidence in the treatment
that I was been given. (This was very important to me).

On 29 December 2012 I completed my radiation. The new year was to commence for me with all my treatment completed.

I felt like a weight had been taken off my shoulders. I wanted to go up Table Mountain to celebrate. It was too windy and so I went up to Signal Hill, wind and all, and let 5 balloons loose in the wind. Each balloon had a meaning. My life was starting fresh and my year of treatment had ended.

In January 2013, I had all my tests done and was given the all clear. My doctor confirmed I was in remission and my 5 year medication started.

I only wish that my friend Lynette was with me today to get the same results. I can say however, that my cousin who was diagnosed with breast cancer a couple of months before me, has also been given the all clear.

People tend to think that once in remission all is ok, but the fear when you go for your check-ups is still there. The joints in your body may still ache and your feet may still be numb.

We are not all so lucky to have a support system . When people say they have cancer, you tend to think of it as a death warrant, but there IS HOPE and for many of us light at the end of the tunnel.

My hair has started to grow back and I can flutter my eyelashes again.

I still live on sleeping tablets as I don’t sleep; find my hands and fingers clenched at times and then I have to remind myself to be calm and relax. But it is not all that easy…

I have since been boarded due to Fibromyolgia & arthritis and because I need to take a large amount of medication to manage my pain and keep me going.

Thank You God for being with me all the way. Through my experience I am hoping to help others through their tough times.

I can also say thank you for the times that I was able to have special weekends away while I was ill. Many a time I would stare at the sea that went on for miles in front of me and that is where my mind was at times. (A feeling of never knowing what to expect or where you were).

I definitely live life to the fullest and make the best of any circumstance that arises.

I have since had reconstruction done to my breast in the last 3 years. My last operation was in June 2015. It has been a success. My nipple has been reconstructed. My plastic surgeon advised me that this would come from the inside of my leg. The result could not have been better. (Smile).

I have however since had two knee operations, and been diagnosed with Barrett’s Syndrome (which means I have to go for regular scopes).

But I am still living life to the fullest (LIVE, LOVE, LAUGH and DON’T GIVE UP!)

So burn the candles, use the nice sheets, wear the fancy lingerie. Don’t save it for a special occasion. TODAY is special!

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