Thursday, September 29, 2011

Tribute to a friend

Yesterday we attended the funeral of Julie Haines who passed away last weekend after a 2 year battle with leukaemia. She was 38 and left behind her husband Paul (James' previous business partner) and two children Emily and Matthew. Her journey involved much unbearable pain in the end - which I find incredibly sad. Both James & I were upset by the news as Paul and Julie's journey was very much paralleled to ours physically and emotionally though our working connection and birth of the children. We are incredibly saddened by the loss of a mother to the children but grateful that her pain has ended.

It reminds me again that there is no fairness in cancer. It can affect anyone at any time regardless of age, sex, religion or demographics. The good old certainty in this world death & taxes!

I had other news yesterday... A drug company contacted me saying that they are unable to tell me what drugs are available to patients in the world due to regulations in South Africa. Do you know, after the call I just got so incredibly angry. I am SO sick of being messed around. The drug companies are MORE than happy to charge you astronomical fees for the drug when you are sick but provide nothing further to the larger community. (in the brain tumour context) I cannot take on a large organisation myself and that is what they rely on - I suppose. Man, there are so many more patients then drug companies we should start protesting heavily. The status quo in SA is that there ARE medications for brain tumour patients in other countries BUT we just have to happily wait for 2 - 5 years for them to be available in SA - BUT only if they are accepted by our government and medical aid companies.

I was told I am "NOT ALLOWED" to tell people what drugs are used for patients with brain tumours because I am not a doctor. How on earth am I able to run a brain tumour foundation if I can't let people know what they can look up for their treatments? Anyway, who are these people to tell me I am "Not allowed" to tell patients? What should I tell patients who talk to me - wait and die? Seriously there is something WRONG with this system and as patients we should take the power back and demand that we get fair and honest treatment. If not, lets not support their products or the doctors who don't wish the share valuable information.

Monday, September 19, 2011

My blog... an old girl

Do you know that I have been running a blog for 4 years! So, although it is not an old girl, but rather a toddler - I still feel like it has been going for a life time. When I first looked at getting my own blog, I was too scared to actually tell people I had a brain tumour. So I just put pictures of my travels on the internet. When I finally got the courage to "Get Real" and put up the site of my journey with a brain tumour - suddenly I got a response. Sure, many of it is from people with a general morbid fascination for death. But I think most of the readers get something out of it as much as I do. (Well at least I hope so!)

The reason why I actually put information of my brain tumour surgery etc was that I was tired of taking phone calls from people on my status of treatment. I was trying to run away from others and ended up actually being part of many people's journeys in a very small way. It has truly been a rewarding thing to do. I know I am starting to connect with other people in a more real way - even if much of it is over the internet or via the phone. It has given me a medium to feel free to reveal myself in a reasonably safe environment.

Many people have said to me that they want to write a book and don't know how to do it. I can't tell them how to write a book. My book is just the emails, writings and blog entries over four years. So my only advice to anyone who wants to write a book is to say just write something everyday no matter how short the paragraph might be. Even if it never becomes a book, it will be a valuable exercise.

Saturday, September 17, 2011

All about the hair

Oh a lighter note! My hair is getting really long now - well shoulder length! I look at the pictures of egypt and I am SO grateful that it has come back - I feel like a new recycled me! Leo has got into the habit of calling me "Mother" and not "Mom" - it is quite amusing! I have decided that I will go for the scan only once per year as I feel that it is not necessary every 6 months - unless of course I don't feel well. So far so good though!
Nite nite
PS Could someone post a comment! It is getting rather quiet here!!

Language of humanity

Jer 29:11 (NIV) "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." 

How can I explain to those who are able to speak what it is like not to? I can hear my words in my head, but they won’t come out. Am I no longer human, have a been reduced to being an animal? Although my body is capable, my brain will not allow it. I am still me, I just can’t tell you who that is.

God sent me on a journey to understand the meaning of life so that I might find the words that would be mine. He showed me how I can use these words for others. Yet he showed me that our words are not God’s words. Our words confuse us, our words are not to be trusted our language is used for self interest. Our words make rules, our words disempower. Our words are cruel and ignorant. We are made in His image, He breathed life into humanity and this breath sits on our tongue. I am here to say these things, to speak the words.

 I spoke at a women's breakfast on Friday and have spent much of my day today pondering what I said and if it was "good enough" I believe that there are things I said that still need to be refined, especially around the ethics and work. But I do know that when I speak about my story, it hits hearts. I can't say that I honestly think my story is amazing - because I don't think that it is. What i do believe is that I have been put in a position to talk about the things that have meaning and truth.

Why does God debilitate my writing, I have asked myself? Why does my language come out wrong? Why does it take me so long to write? I know why, it is in the complexity of the words that the message is lost. It is in the simplicity expressed out of of the complexities in my head that I can be heard.
I believe that we do have a common language of humanity. Many of us just can't speak it, although we understand it, it just gets stuck!  Like in my case where my brain didn't co-operate, perhaps the human soul is damaged. So perhaps in my life journey my path was meant to be muted in order to express the true utterances of the value in this life. Love, faith, hope and healing.
“If you talk to a man in a language he understands, that goes to his head. If you talk to him in his language, that goes to his heart.” Nelson Mandela

Monday, September 5, 2011

Back in the saddle

I cannot express enough how busy life has been over the last 3 weeks. The conference was a great success and I would like to give Denis Strangman (International Brain Tumour Alliance - a big thank you for all of his support and advice which has been an invaluable assist to us. The reason I say it was a success is that we networked, got a good idea of what is happening out there and of course got to expose the needs of patients with brain tumours in South Africa.

SO... what can I share that I feel would be relevant? The list is endless, but I am in the mood to be a little  controversial - I would like to mention medical ethical policies. As we know, the medical institutions are inundated with medical needs of patients and they can't keep up, particularly due to the high incidence of HIV / AIDS. So they would like to come up with a 'fairness' model of how to address treatment and management of patients. The issue is that this would mean 'grading' cases in order of importance or chance of survival. Understandably when a very old person gets ill they don't receive as much attention as a child who is 12 years old based on survival. BUT it also means that brain tumour patients, who typically having a lower chance of survival, will be listed as a 'lesser' cancer to other 'common' cancers like breast cancer who have  a better prognosis.

So, should this type of grading be enforced, I would probably not have been treated and be dead today. Ok so I am exaggerating my case, but I do wonder if it affects other people in society who can't afford medical aid like I could. The other issue with the medical body who is coming up with this 'fairness philosophy' towards medical treatment, is that I don't see any patient advocacy groups being invited to these discussions to represent the needs of people. The team as far as I know are professors. This is essentially going to create an environment where doctors will have to follow policy before their medical oath "...Into whatever patient setting I enter, I will go for the benefit of the sick and will abstain from every voluntary act of mischief or corruption and further from the seduction of any patient..." Hippocrates

So, I feel that we as the valued "customers" of drug companies, doctors and medical technology should start demanding that we also have a voice in our treatments. Just a reminder that we as patients need to learn a bit of responsibility too...we know when there is something wrong with our bodies and therefore patients need to 'grow' up and say what they need in an honest, safe and realistic environment.

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