Patient Testimonial
Eldré’s Story…
Cancer at age 31 was something that I never planned. When I was diagnosed with breast cancer it turned my whole world on its head. I was fine with the question why me, but why now is the one that needed answering. I had so much life to still live. This couldn’t be the end already. So much I still wanted to do. This just didn’t fit in with the plan I had for my life.
Reflecting back I sometimes only now start to really absorb and deal with the enormous impact that one sentence: “You have cancer” had on my life. The things I mostly remember from that year were the physical battle. When I made the conscious decision to fight this unwelcome intruder in my body with everything I had, it turned into a mental and physical yearlong battle. I remember the loss of my hair due to the chemo, the nausea after treatments and above all the tiredness. Cancer is an illness that asks everything from you, because it can take everything. It shows up when you sometimes least expect it and whether you are ready or not you have to take up the fight.
My advice to someone that’s just been diagnosed with cancer would be to try and make educated and well thought through decisions for your path to health. Obtain as much information as possible on your specific cancer and insist on all the tests, i.e. genetic testing, HER2 test etc. Make the best decisions for you, as you have to live with those decisions. If you do not feel comfortable with any of your treating doctors or their decisions go for a second or even third opinion, whatever it takes.
Know your rights and take control in the areas where it’s possible. Take time out when necessary and talk to other people who understand what you are going through, whether it’s a friend, a social worker or an organisation like Campaigning for Cancer.
The impact cancer has had on my life is enormous. It’s been a very long journey up to here, but by the grace of God, my family and friends who supported me right through everything I’m still alive and living my life to the fullest.
For me, the only thing that matters in the end is that I loved and am loved.
The Williams family’s Story…
When you are diagnosed with cancer it is not just you who has to go through all the terrifying experiences associated with its treatment but your whole family. When my Dad was diagnosed with cancer it was probably one of the biggest shocks of my life as he was one of the healthiest people I knew and it was totally unexpected, but after the initial shock I was positive that we could fight this giant together. At least he had a good medical aid - or so we thought. We were very naïve, as I think many people are, in thinking that the big battle would be the disease.
We had never really bothered with checking how much funds were allocated to our parents’ cancer benefits but it came as a huge shock that the funds allocated were totally insufficient for his treatment as the cancer he was diagnosed with was extremely rare and required specialised, very expensive drugs to treat it. We were not prepared for the battle we had to fight and didn’t know just how difficult it would be to deal with a medical aid that was really not interested in helping the patient but was only concerned with the costs involved. For years my Dad hardly ever used his medical aid and sadly when he did need it, they were totally lacking in compassion and understanding.
We were however not willing to give up, so we stood up and started fighting this giant in our path. Tasks were allocated to us, my brother tried to contact the pharmaceutical company who distributed the drug we required, to find out more about the drug. He also made contact with Campaigning for Cancer to ask for help and guidance. I on the other hand had the unenviable task of dealing with our medical aid to get accounts paid on time and to literally beg their Medical Advisors to approve additional treatments for my Dad granted from ex -gratia funds. We kept records of everything, every mail, every account they did not pay and had to be paid by our parents, made notes of every telephonic conversation noting the name and designation of the people we spoke to.
We were very lucky in that pharmaceutical company for a time sponsored the medication for my Dad’s treatment and the medical aid only had to pay for the supporting medicines. This was however only to be for a short time as the medical aid soon indicated that they were no longer going to pay for even the supporting medicines and were only willing to pay for the cheapest chemotherapy drugs, used mainly for breast cancer. My Dad used this twice but he became really sick and we decided that enough was enough. The pharmaceutical company was also told that according to the Law they were not allowed to provide the chemotherapy medicines to my Dad. For a few months our parents had to pay for my Dad’s chemo from their savings but we were of the opinion that this was not fair and continued our struggle.
We scheduled a meeting with Lauren and Samantha from Campaigning with Cancer. What a pleasure it was to meet such positive people who were willing to listen to us and to give us advice on how to proceed. They also facilitated a meeting with Werksmans Incorporating Jan S. de Villiers Attorneys who willingly took on our case on a Pro Bono basis. We are so thankful for their willingness to do so and for Samantha and Lauren who made this possible for us. Without their help we would never have been able to fight this as well as we were able to. The outcome of the matter, after many legal documents, was that the pharmaceutical company was able to provide the drugs to my Dad for as long as he needed them at no cost to him on compassionate grounds and that the medical aid had to pay for the supporting medicine.
My Dad continued to have chemotherapy every month after that and was really doing well until he had a relapse from which he did not recover.
Looking back at it now I realise that it was really all worth it, when our Dad was diagnosed with cancer they gave him about 4 months to live and we managed to buy him more than 3 years. It was not easy and the fact that he lost the battle on 20 September 2008, still hurts. He fought the good fight with us and I don’t think he ever knew to what extent we all went for him and how many tears were shed, but he knew we loved him and that was the most important thing.
The lesson learnt for us as a family is to never give up and to reach out to as many people as possible to help you fight to get the right medical treatment when and how you need it. Never be afraid to fight and fight again, use all the weapons to your disposal and seek advice and guidance from people who know how to go about doing it in the right way. And lastly, never give up where there is life there is always hope and where there is a will there is always a way you just have to find it.
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