Wednesday, December 21, 2011

Come holiday...come 2012...come!

One of James' friends / client has kindly offered us his flat on the waterfront in Cape Town for holiday. We are SO grateful! James, Anastasia, Adam, Leo and myself are setting off on the road tomorrow. We are all so excited to get out and have a break and tick off 2011. Survived another yet - but it certainly was a tough one!

Every year I reflect on the year and every new year I (TRY) set a vision and goals for the year to come. Although many things have not gone according to plan over the last couple of year, I have to admit much has been achieved and I am so grateful to have my life back to the full!

This year we have done quite a lot (planned and unplanned):

  • Moved house twice but we are happy with our home now although our lease expires end of 2012.
  • Did not expect James to not be paid for 6 months which left us in a bit of a crisis
  • Somehow - and I am still surprised - we have endured the global crisis and James is still running his architectural business by the skin of our teeth.
  • We were invited (free of charge) to two congresses and exhibited!
  • Opened the Brain Tumour Foundation
  • My kids passed their grade (well)
  • We closed the weekend trade at The Grove but have successfully used it to a function venue only
  • I have been invited as a guest speaker to many functions and into addressed over 1200 people
  • Sold books
  • Got my degree and now moving onto next steps to get the masters (eventually)
  • Ran my new programme at VW and JCI
  • Back on the specialist consultant list
  • Both MRIs were clear
  • I am sure there is more but my head is full right now!
So now we are off on a well deserved break. I know there are still many challenges we will have to face in the year to come but I am certainly thank God that I have another year to live life to the full.

Thank you so much to my family and friends for their love, support and patience with us this year! I am sure that my busyness has been frustrating but, honestly, I sometimes feel that I live with a ticking clock that could explode at any moment.

Merry Christmas everyone and may 2012 be filled with life, love, hope, health and prosperity! d:)

Friday, December 2, 2011

Good Week

Last week was very productive... after having attended the congress, I was off to the Red Cross children's hospital where I was rushed into scrubs and witnessed a few minutes of a brain operation on an infant. No, I didn't faint! It is quite amazing to see it in real life.

I have been meeting a few fellow patients who have been struggling with the realities of BTs - It really is a terrible disease. The truth of the matter is that many people don't survive for a long period of time. That is when I realise just how blessed I have been. BUT, I have to add, that I honestly don't take my days for granted. I am sure my family will attest to that statement and agree that I am always busy pursuing something. (whether that is good or bad, I am not sure) I think we need to have a day where we say a prayer for those struggling with a BT.

I have SO much admin and data capturing for the Brain Tumour Foundation to do that I almost feel debilitated. I feel like the little train "I think I can, I think I can." So, if I am delayed in getting things uploaded and BT website updated or following up - I hope you understand!

Please remember to order a book, it really is a great book for Christmas or for a person who is struggling with cancer!

Have a great weekend - I plan to!

d:)

Monday, November 21, 2011

In Cape Town... Again!

Well after 3 years I am back in Cape Town, and for a lot more of a fun reason than brain surgery.  It is strange to be at the other side where I am engaging with doctors as a person and not a patient. Cape Town is beautiful as ever and we have been given complementary accommodation at the Commodore Hotel in the Waterfront. It is a 5 min walk to the BOE centre where the congress is taking place. I am so happy and grateful to have this accommodation that is so close to the area that we can just take a walk to the congress and back. So because they have been so nice to us and given us this spoil, I ask any of you to consider them when you are next in Cape Town.

When we got to the BOE building, everyone had set up their elaborate stalls. (Although due to space limitation, not as elaborate as the SASMO congress.) We had to wait to find a spot for us to set up, as the original space was too narrow. It literally took us 15 minutes to set up. We decided not to use a back for the stand as there is such a beautiful view around the marina and of the mountain. What stand could possibly top that? Once again I was struck by the futility and absolute waste of money in setting up these stands. Sure have something that looks good, but I have to question the level of how much is spent on a stand vs how much is spent on a group of patients. The BONUS is that our stand ended up right opposite to the tea and coffee area and next to Netcare who are looping a video of brain tumour facts! So, in a weird kind of way, they are selling the foundation for us!

James and I attended the opening function last night, which was a simple wine tasting and snacks. Like the last congress, I found it impossible to actually network as everyone had their little cliques. James and I did find a table with two neurosurgeons who then proceeded to opening hit on me! Too much wine and FAR too much ego, the classic "I will teach you to be a neurosurgeon" comments. To think that I could have had that as a doctor is quite scary. I have, however, met some really genuine doctors who have a passion for patients and are not driven by money. (But believe me there are many that are in it for money alone) I will be visiting the Red Cross (where many childhood brain tumour patients are) as well as Groote Schuur (one of the largest and best state hospitals in SA) on Thursday.

I am so grateful to have James with me to help with bags, set up and fending off doctors who obviously think I am available and 'want' them. Seriously? Although he does have to go back tomorrow and I will have to sit the last two days out.  He needs to get back to sort out his business and kids. The years is quickly drawing to a close and we are needing to make sure we are covered financially.

Speaking about money, perhaps one of the things that is really bothering me is that when going to these things, I see so much money being spent on the wrong things. So far, other than a bit of funding to cover the SASMO congress, James and myself have been funding the foundation personally. I just can't go on like that forever. I want to discuss this with some doctors to see if they would be willing to donate towards the foundation so that I can do it more on a full time basis. However, if I cannot get funding, I just literally can't afford to go on. Something that has been burdening me for sometime now... besides the injustice of the situation, I also feel that I could contribute in some way. Ultimately we only have one life and when the reality kicks in that we have to be living it fully, it is often too late. As much as we need money in our society, wealth does not create happiness or meaning. The unfairness is just so evident and I hope that our children will be less selfish and more connected with the realities to make this a better place. Once again, something I intend on covering in my masters.

Thursday, November 17, 2011

Brain Tumour Foundation of South Africa: WSSFN Congress Cape Town

Brain Tumour Foundation of South Africa: WSSFN Congress Cape Town: The WSSFN Congress takes place in Cape Town from 20 - 24 November 2011. This congress is for the World Society for Stereotatic and Function... Click for more information

Sunday, November 13, 2011

A second opinion - irapid consult

Thanks to looking at Sarah's blog (listed in bloggers links) I noticed a blog she suggested which was Viewbeyondthetable.com which was a blog where specialists had recently written articles about brain tumour types. On further research I found that this blog was linked to a website in Calgary, Canada. There are a team of medical professionals who focus only on CN brain tumours and offer second opinions. Obviously no-one is saying that your doctor hasn't made the correct diagnosis, but it is my opinion that too often in South Africa we believe that our treatment and our cancer lies in the hands of one doctor only. This autonomous approach is not helping you, the doctor or your family. (Something I am bound to write on later) Anyway, they took 48 hrs to review my case after I emailed all my MRI picture and completed the form online. This certainly was a rapid response.  I highly recommend their service for your own peace of mind and to get an international understanding of what treatment options there may be for patients. Their website is www.irapidconsult.com There is a cost involved, but at present I am considering trying to set up some trials and second opinions through the Brain Tumour Foundation of South Africa. Below is my summery all the way from Calgary! (Please note they have given a lot more information that I just don't have space to publish)


Welcome Deirdre ! |
Patient: Deirdre Kohler
Submitted on: 11/10/2011 2:18:37 PM
Uploaded file: MRIReportDKohler.zip
Reviewed on: 11/12/2011 10:27:19 PM

Summary
In summary, you began having psychomotor seizures at age 21, which almost certainly relate to your left temporal lobe tumor. It is also possible that the event during childhood were seizures and would also likely be related to your tumor.  In 2008, your surgeons removed a tumor classified as oligodendroglioma grade II-III. From the information you provided, not sure of 1p19q status. In addition to surgery, you also received fractionated radiotherapy and temozolamide. Both of these have been shown to prolong disease free interval and survival in patients with oligodendroglioma.
Follow-up MR images show a resection cavity and MR signal changes (water) in the adjacent white matter which do not show local mass effect or change over time. This favors radiation induced changes rather than residual tumor. Furthermore, I understand you are clinically stable.
What are my options?
Option 1: Radiological observation with MR imaging.
My My chance of getting better
This strategy will not result in clinical improvement. In addition, you should conduct an exercise program as people with tumors who exercise do better than those who do not. Although not proven, it would likely be beneficial to take anti-oxidants such as vitamin C and E.
My chance of staying the same
Relatively high, particularly if the white matter changes are indeed related to radiation rather than residual tumor.
My chance of getting worse
Depends on the nature of the white matter changes. If the changes are secondary to radiation, they will not likely progress. If residual tumor, however, at sometime they would progress necessitating re-do surgery and / or chemotherapy.
Option 2: Surgical intervention at this time.
My My chance of getting better
None, particularly clinically stable and your images have not changed over time.
My chance of staying the same My chance of staying the same
High, however surgery could as well damage fiber tracts or brain connections resulting in increased deficit.
My chance of getting worse My chance of getting worse
Low, however the white matter abnormality involves an area of your brain controlling speech. Therefore, biopsy of the tissue cannot be performed without some risk.
What should I do?
Serial MR brain imaging. As stated above, it would also be beneficial to have your pathology reviewed and the molecular nature of your tumor established relative to 1p19q deletions.
References

  1. Bauman GS, Ino Y, Ueki K, et al. Allelic loss of chromosome 1p and radiotherapy plus chemotherapy in patients with oligodendrogliomas. Int J Radiat Oncol Biol Phys 2000;48:825-30.
  2. Cairncross JG, Ueki K, Zlatescu MC, Lisle DK, et al. Specific genetic predictors of chemotherapeutic response and survival in patients with anaplastic oligodendroglioma. J Natl Cancer Inst 1998;90:1473–9
  3. Cairncross JG, Macdonald DR Successful chemotherapy for recurrent malignant oligodendroglioma. Ann Neurol 1988;23: 360-4.
  4. Yan H, Parsons DW, Jin G, et al. IDH1 and IDH2 Mutations in Gliomas. N Engl J Med 2009; 360:765-773
  5. Cairncross JG, Berkey B, Shaw E, et al. Phase III trial of chemotherapy plus radiotherapy compared with radiotherapy alone for pure and mixed anaplastic oligodendroglioma: Intergroup Radiation Therapy Oncology Group Trial 9402
  6. Shaw EG, Scheithauer BW, O'Fallon JR, et al. Oligodendrogliomas: the Mayo Clinic experience. J Neuro- surg 1992;76:428-34.

Thursday, November 3, 2011

MRI Results November 2011

Well the machine was it's normal noisy self - no surprises there. As per usual I triple plugged my ears and that was manageable. I have now had my 12th MRI (I worked it out the other day)

I still need to see the oncologist and neurologoist but the report from the radiologist is as follows (the conclusion only)
  1. There are post-surgical changes in the left posterior parietal lobe with post-radiation changes in the white matter.
  2. No recurrence of the glioma
  3. Compared to the previous study no interval change.
So all in all it seems positive. I am, however, concerned about the radiation type damage that seems to be evident on the scan as an items that were not there before so I am definitely seeking a second opinion. I can believe that there is radiation damage as I have this vein that is "popping" out of my head at the temple. It seems to be weak and reminds me a bit or the animation series "Stressed Eric" - looks like its gonna pop any day!

One of the concerns I have with the report is that they refer to the tumour as being in the parietal lobe and not the temporal lobe as per my original diagnosis. Anyway - just hearing of NO GLIOMA is always good news. So I tick this off for another 6 months! I do plan on taking it with me to CT for the congress I am attending. 

Please check on www.braintumour.co.za because we have a few things happening which seem to be very exciting! I would love everyone's support. The Brain Tumour Foundation has been invited to exhibit at the african neurosurgery congress (thats not the real name, its some long name so this is my version) here is the website http://www.wssfn2011.org/ So James and I are off from 17th - 24th November. It is really exciting to be able to get involved.

Funny story: My mom, when she went back to university to study, used to drive to fetch my brother with frozen peas on her head as she said the thinking made her head hot! - thinking is a dangerous sport!

Here pics from the MRI results:


 




Tuesday, November 1, 2011

MRI booked!

Finally I have braved the storm and going for my MRI on Thursday at 8:45... Time again for a horribly noisy machine, injections and hours of anticipation waiting for results. Believe it or not after having done this now over 10 times, I have trained myself to go into a semi-sleep state plus most of the time I spend in there is in a meditative prayer. For those who have been through it I am sure you know what I mean.

I can't pretend that the MRI results doesn't scare the hell out of me BUT at least I know I am going to get it over with. I can then also take it to CT with me for Dr Butler to have a look at...

Results to follow shortly...

Friday, October 28, 2011

Book review

I "found" this book review in the Citizen and thought I would share it! So exciting!

http://www.citizen.co.za/citizen/content/en/citizen/books?oid=187553&sn=Detail&pid=146862&Brutal-Honesty---Battle-for-the-brain-–-and-life


Brutal Honesty - Battle for the brain – and life

This is a personal account by Deirdre Kohler of how she battled and conquered a brain tumour that threatened her life.
13 April 2011 | Dries Brunt
    
Not rated yet.
Brutal Honesty by Deirdre Kohler (Big People), R130. ISBN: 9780620487993 - This is a personal account by Deirdre Kohler  of how she battled and conquered a brain tumour that threatened her life.
Her story includes the full cycle from  symptoms, epileptic seizures to surgery and recovery. 
But she is not alone in this battle.  Friends, including an American who had lost his wife to a similar disease, her husband and family and a strong faith helped her.
Information about degrees of brain cancer, the difficulty of diagnosis, decisions to take on radiation, chemotherapy or surgery and at what stage, the process of recovering after the surgery make this interesting reading.
  From medical detail on brain cancer to a sense of compassion, sympathy and admiration, this book has it all. 

Wednesday, October 26, 2011

"Hello Doctor"

There is a possibility that we will appear on "Hello Doctor" TV show. That would be SO exciting and a very nice platform to expose the Brain Tumour Foundation. As the show is in Cape Town, they have asked if we can arrange to see Dr Melville too. Wow, I haven't seen him for 3 years since my surgery. That would be very interesting!

No, I still haven't said "Hello Dr" Dupper! Sigh, this week has just been busy and I know I must give him a call, along with a dental appointment, my kids going for check ups, work, varsity, end of the month, hair cuts for my boys and a travel plan to CT. So, it is not about avoiding the MRI, just rather trying to fit it in. For me, it is just not a priority anymore. I so blessed for the way God has worked and enriched my life.

Monday, October 24, 2011

Successful Brain Tumour Awareness Tea Party

Well, I am pretty exhausted after the event we had on Saturday. I am definitely not going to cater and run the event again. My mom (Lynn Page), Bronwen McMahon and Melanie Darlow were all assisting and absolute stars. We were pretty overwhelmed at the response and had over 80 people book - although there were 7 that didn't arrive it was still very full! We had such wonderful sponsors of prizes etc - It really makes the event fun and special. I will put some feedback online shortly.

Dr Dupper is moaning at me to go for a MRI scan this week! I suppose I have to "face the music" and have it done. BUT what a horrible interruption to what it is I am doing and I will admit it does scare me. Although to be honest I have not been feeling great over the past couple of weeks. I am not sure if this is due to just the busyness over this period and a bit of stress around our finances. (most likely that) Anyway... I will see how it goes!

Tuesday, October 18, 2011

Time to be a doer

In speaking to a fellow BT patient yesterday who has just laid out hundreds of thousands for treatment. I have yet again felt obliged for us as a population to stop being docile and actually getting things done. Patients are NOT getting drugs in South Africa. So you have to have money if you want treatment. If you are poor you will probably just die. Why are we accepting this? I know we don't live in a fair world and that we are all gonna die - that is a fact! But we can make a difference, lets make the most of the life and celebrate it with bravery and will. No-one is asking you to go out there and fight a war. Just standing together and working in your community to make a better place for all is incredibly powerful. We are built to co-operate but often we just feel we can't do things due to financial constraints. I think we have a lot more resources than we think.

So if you are one of those who has made the decision to live, I would encourage you to share your life with others in a meaningful way!

Thursday, October 6, 2011

Upcoming events

I am really wanting to be more actively involved in spreading the word for patients but also raising awareness about our social issues, including our environment and medical care. We are doing an edible planting initiative to celebrate life and love which is really exciting.

22 October 2011 : Brain Tumour Fundraising Tea
Place: The Grove Lake Side Road, Port Elizabeth
Time: 11am till 1pm
Entertainment:  2 speakers, 2 singers and planting seedlings.
Catering: Sweet and savoury platters and coffee / tea
Price: Tickets are R55 p/p and 10% of funds go to BTFSA 
Venue information:  www.greenvalleyestate.co.za 

3 November 2011 : Brain Tumour Benefit Tea 
Place: Casa Blanca Coffee Shop & Restaurant, Cape Town 
Time: TBA
Entertainment : Lucky draws and guest speaker
Catering : Sweet and savoury platters and coffee / tea
Price : R100 p/p includes 
Venue information :www.casablancarestaurant.co.za

NB: Please bring edible type plants / seedlings with you to the BTFSA functions so that we can plant to celebrate life.

For more information please call Deirdre on 083 380 3725 or emailinfo@braintumour.co.za

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
d:)
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 - www.theibta.org) 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.

Saturday, August 27, 2011

SASMO / SASCRO Congress

Well after a hectic but successful week we are in the hotel and I have a moment to actually catch up with what went on...





The story coming soon...

Tuesday, August 16, 2011

Girl interrupted!

You know (probably only if you are a girl) when one day - out of the blue - everything just becomes too much. And then, you start crying for nothing in particular but rather everything particular. Yes, that is how my day started today. (I call it stress relief) I have realised (against my original thought pattern) that, in life, we just can't rationalise everything. I don't think people understand how significantly my thoughts have changed through my experiences! And, in a way, it is about allowing myself to feel sorry for "me" and all that have have faced.  So there!

When I saw this sticker (www.zazzle.com) while looking for brain tumour exhibition materials, I thought - perfect that is exactly right although I admit I am tired of fighting. You know the saying " I am sick and tired of being sick and tired" - yip I understand that more than you can imagine. Don't you ever feel that "Dear God, I REALLY need a good year all round"  So that was the chat I had with Him this morning. I just want a life that is simple, stop with the money and the work and the physical limitations. How on earth can we breakaway from these things? It is physically not possible, but how do I stop it from messing up my mind and my spirit. Well I look forward to someone's answer because I certainly don't have it and no package from the sky has arrived yet with the answer on a plate! All I can say is "Humans really have messed things up for themselves and others" now we have to go though a whole period of recycling our humanity - challenging!!

Monday, August 8, 2011

Tick Tock Tick Tock

Well the conference is two weeks away and the list is still very full! We moved to a new house last week and I must be honest, I was completely exhausted. Hopefully we can settle for a while this time! Every time I feel the tiredness, I have a small panic as the memories are brought back. I felt as though a seizure was coming on last week so just decided to stay at home...I also have to go for the normal MRI in a couple of weeks ...Grumble :(

I have really been noticing what I have been eating. Every meal that we put into our bodies is either helping us or is toxic. Lately, because of all the busyness, I haven't got around to getting my smoothies and can physically feel my skin drying out. No there is no scientific evidence for this logic but to be honest I don't really need anything scientific to understand how my body works. Oh yes, according to CANSA it seems as though 90% of cancers are caused by external factors and not genetics... So, perhaps, I am not too far off in my assumption about my early years falls? No need to hypothesise though, unless it may help the researches in finding a cure.

I did a talk on Saturday to close on 400 people (I was one of 4 guest speakers) and it was really fun. It was very casual as I didn't feel like having tears all over the place! There was a plastic surgeon before me telling us about all kind of things depressing about ageing... Botox included. So I opened up my talk with "Botox was originally designed for serious migraine sufferers and later the facial benefits were noticed for cosmetic purposes. So if I ever have Botox it will purely be to avoid headaches and not because I think I am looking older!!"

Tuesday, July 5, 2011

Brain Tumour Foundation of South Africa

Well after an absolutely awful week last week, I am glad to say it is over and hopefully I will not have to experience a week like that in the future. I spent much of the time in tears, fighting, depressed and discouraged. All I can say is that it is over and I am dusting it off!

One VERY good thing that did come out of last week is that the Brain Tumour Foundation Charity Trust is registered and ready for action! We have three trustees Bronwen McMahon, Melanie Darlow and myself. We are still very new to this and once the kids are back at school, the ladies and I will sit down and plan the future (as much as one can!) We do have a sponsor (MSD) who are sponsoring the printing of educational material for patients and their family. They are also contributing to us attending the SASCRO SASMO CONGRESS 2011  This is very exciting as we will finally be getting some exposure. There is a lot of planning that needs to go into this! We have been given a stand to be part of the exhibition too. I would like to thank Rhyno Kriek for organising all of this for us so wonderfully. His details are on the website listed above.

Denis Strangman (From the International Brain Tumour Alliance) and I will participate in a couple of sessions and cover the following topics

  • What brain tumour patients and their caregivers seek from their treating doctors (Based on the results of the IBTA surveys);
  • Personal brain tumour survivor story
  • The involvement of brain tumour patient advocates as partners in clinical trials and research
  • Needs of brain tumour patients and the role of the Brain Tumour Foundation of South Africa
We would like a sponsor to contribute towards the distribution of the IBTA magazine in SA and any sponsors in any capacity will be given the appropriate exposure. For corporates needing a wellness talk in your business environment, you can claim back donations you have make!! Come on people...


Monday, June 27, 2011

So now what?

Well I may be jumping the gun but it looks like we have lost the deal to buy the house. Once again my ironic life steps in... James has put in an application at one of the universities in April but we still haven't heard anything. So I asked to him today, when he popped home, "Would you still consider moving if you get the job?" He answered "probably not we have too much going on and we are settled here". Literally 3 minutes later we get a call from the estate agent to say that the owners of the house signed a contract with another couple without even contacting us. The frustration was that we couldn't get bank approval till James university contract was processed. (He has been lecturing for "free" because the administration has been useless) We have been waiting for 5 months and granted the owner can't wait forever. The irony - the contracts came through on Friday last week. So, I asked James the question again 10 minutes later and the answer "I don't know anymore"

I struggle to understand what I am supposed to be doing with my life. It seems as though when I have a plan something seems to get in the way. I am having second thoughts about my coffee shop... I still hope that God will just send a little box from heaven with the answers! Sigh!!

Anyway, I just want to get the subdivision through for the farm (delays delays delays) and get the Brain Tumour Foundation off to a good start. Touch wood! The paperwork is just a pest...

I really don't want to get a house, rather a townhouse or flat because the maintenance is just a waste of time. I think I just need a place to rest.

James and I celebrate our wedding anniversary on Sunday and we are planning to visit the Grahamstown arts festival! Hopefully there some good shows on!

Thursday, June 16, 2011

Oncology Conference in South Africa Sun City

We have received sponsorship for printing of the Brain Tumour Foundation printing of the booklets and to attend the medical conference from the 24th August in Sun City. I am so excited. It will be a break from the normal as well as expose the foundation to the medical workers. I am considering doing a drive up and stopping in Bloem and JHB to visit the oncology centres and drop of some of the BTFSA booklets.

We are hoping that Denis Strangman (International Brain Tumour Alliance) will be able to join me and show me the ropes!  I am considering the following topics:
Denis:
1) "What brain tumour patients and their caregivers seek from their treating Doctors" (based on the results of the IBTA surveys);
(2) "The involvement of brain tumour patient advocates as partners in clinical trials and research"; and
(3) The role of cancer patient advocacy groups in the USA, Europe and Australia.

I do talks on
(1) corporate philosophy and wellness (does your business have a death drive?)
(2) personal journey of surviving a brain tumour.
(3) Needs of brain tumour patients and role of BTFSA (Brain Tumour Foundation)

If anyone wants to get hold of me to participate in some way on this "road show" (Like invite us to do a talk, arrange venue or accommodation etc) please let me know.

I have so much paper work that I don't know if I am coming or going! I just have to get things ticked off on my "To Do" list as soon as possible. But I am HAPPY that we can get things going!

Wednesday, June 8, 2011

The Golf Ball in My Brain: Race for Hope 2011

Read the : The Golf Ball in My Brain: Race for Hope 2011: "For the first time in years I ran a 5K, a very special 5K. This was the Race for Hope to benefit the National Brain Tumor Society and Acc..."

Can you believe it but I found a picture of my radiation mask at the recent race for hope in USA on a fellow blogger's website!! d:)

Tuesday, June 7, 2011

Philosophy of money vs wellness

Today was quite an interesting one to say the least.  I feel like I have made a break through in my masters on "Corporate Philosophy" because to me "Wellness" is directly proportional to the environment we are living and working in. I have had a few interesting meetings and have realised that a large problem in our society is that we don't have a tangible grip on reality. Let me elaborate...

Back in hunter and gatherer days, humankind would have to search for food and perhaps plant foods to sustain their needs.  They had to work with nature (and each other) to obtain their basic needs. This tangible link must of created a sense of reverence and connection with nature and others because if they did not maintain their environment they would no longer be able to eat off it. Then came money, so now people were working for money and couldn't "see" the fruits of their labour. Work became about selfish attainment of money. There was no more connection with the source of our sustenance, as money was the invisible thing everyone aimed for. We still have basic needs like food and shelter but the difference is that we have no connection to the source of this commodity. We also then buy things that have no reference to reality and are purely selfish.

So between the two large companies I had dealings with I have realised that the "powers that be" are as invisible and unattainable as the money they supposedly have. I was told by a major pharmaceutical company today, that they don't have any money for the BTFSA and can't support the foundation due to "budgetary constraints" but they did credit me with the efforts I am making in the community. I may believe this if I was asking for a fortune but when I am only asking them to support 10% of what my PERSONAL drug costs came to, I struggle to believe in the integrity of the statement.

So I beg to understand what our corporates are aiming to achieve. (Assuming it isn't profits) I am SO grateful that there is a drug available for people like me BUT I want to understand if there is a responsibility of corporates to the source of their sustenance. I believe that there is and I believe that each human needs to understand where the fruits of our labour come from. Our efforts should promote life in all forms and this includes customers, environment, nature and people working in the organisation. What is the purpose of killing everything in pursuit of profits? Ultimately, shouldn't we enjoy our work in the short life that we have been given? I believe it is possible to enjoy the work we do IF we step out of what we want and move into sustaining the world and people that support us. Perhaps then, life will have a bit more meaning and work would be fulfilling?

I suggest that our corporates start looking at their corporate philosophy because I can promise you that "wellness" in the individual is directly proportional to the environment that the individual lives and works in.

Saturday, May 28, 2011

Brain Injury and Brain Tumours

I have often wondered if there is a link between injury and tumours. For me, I had a massive fall in the bathroom early one morning and hit the corner of my head on the shower floor edge. (This accident was two years before diagnosis of the brain tumour) I had concussion for 2 days and an "egg" on my forehead for 5 days. After that event I had vertigo for week, tiredness etc. I have also had a few falls as a child etc. Surprisingly, they have all been on the left of my head close to the area of the tumour.

Today while browsing the internet, I noticed a few medical cases researched of a resulting brain tumour a few years after brain injury. I can't but wonder if there isn't a link between all diseases and injury. Maybe bruising in our bodies causes longer term side effects than we thought? Obviously to get cancer there needs to be a genetic sensitivity to turn healthy cells into cancerous ones. But if we compare skin cancers, we know that sun damage has a long term risk for cancer. So would it not be true to say that perhaps our risk of cancer is not just genetic but also injury related of sorts? We could hypothesise that breast cancers may be stimulated by the contraceptives women take these days?

I am not a doctor, but I am a patient. I think perhaps we need to see if there are links between cancers and injuries. Our bodies are so fluid and change so often that perhaps when they replicate, the DNA passed on is damaged and passes on cancer cells?

Food for thought! d:)

100 days

I logged on today and noticed that 100 days ago I had my last MRI. So I have about 80 days till my next one. How I hate the scans!! But other than the flu that is still pestering me, I am well. Life goes on - just too quickly!

Today I am "duty" at the coffee shop but it is quiet so I have sometime to surf the internet etc! I feel a little guilty for not actually wanting to work - but only a little. I have also been reading "Quantum Healing" by Deepak Chopra and have been amazed by the idea that we can actively influence the healing process in our bodies. What for me is the most amazing is how wonderfully our bodies are made and how our bodies intelligently fight disease. For me personally it just shows how we should be looking at what we feed ourselves. We are like nature and our physical bodies need to be looked after in the same way our gardens need to be. Enjoy the fruits of life - in moderation!

My friend Sandra has her 2nd child yesterday "Laila" - congratulations to Sandra, Sven and Ella on a new daughter and sister!

Sunday, May 22, 2011

Inspirational Talk

I have eaten too much and not exercised at all. So I can feel my butt turning to flab and my stomach expanding. Yes I think it is time to go to gym. Whenever I feel really tired it takes me back a couple of years ago and I have a harsh reminder of what being tired can mean.

On Friday I did a talk to the PE business women's club. It was a lovely morning. My granny joined me and it turned out so handy because she had brought books with, change for notes and even a money box! None of the things I had thought about! It just shows me what a good businesswomen she still is! It is amazing how little people still know about the brain and patients with brain tumours.

I would really like to do a road shop in SA and promote the brain tumour foundation BUT I can't find a sponsor. My thought is that I can do a few inspirational talks & book signings - so to all those out there, please let me know if there is someone who would benefit from the exposure and willing to pay for the roadshow! I think that many of the drug companies could support their patients in this way.

It has been really slow at the coffee shop so we may have to close and only open for functions booked. I must be honest I have no idea what to do!

Thursday, May 12, 2011

Flu...

I was SO proud of myself assuming that for some obscure reason I was the only person who seemed to be immune to the flu going around. I ascribed this to having blood still infused with radiation material. BUT I was wrong - so now I sit with "snot and trane" while watching the most dumb programme "Survivor SA" I don't know if the crying is from the programme itself, the fact that I am actually watching it or simply the flu. Regardless they are all on the same scale.

I feel so guilty for living in my "own world" for the past couple of months. I have definitely enjoyed having my space for a while. Having to worry about money, homework, laundry and employees is nothing but a drag to say the least. Not that that has totally stopped but I have just not given it my full attention.

Last week Saturday I did a talk for the Salvation Army. Man, it really does put things into perspective. We are so busy worrying about all the little things and these people are dealing with serious problems like loosing everything in a fire. I felt like such an idiot giving an inspirational talk and being healthy.

I am still attending classes but just feeling dumber by the day when I realise just how much I don't know. One of the assignments is to write a discourse. What a joke, I don't write or speak co-herintly as it is and now I have to do it at a high level! All I can suggest is that once again God reveals his sense of humour in my life. A lady who had a brain tumour in her speech area ...is writing. It just reminds me that all things are possible...

d:)

Monday, April 25, 2011

A Philosophy of Life

When I was diagnosed I did start wondering what this life was all about. I have gone through a (hard) personal journey of what it means to live a life of meaning and what happens when you die. I have the slogan "decide to live" and I feel that is something that has to be done every day- as we know some days are harder than others.

Part of what I want to submit in my philosophy thesis is questioning philosophy statements of people, businesses and states. Here is an excerpt that I hope will inspire you to think of your own life philosophy and make it one of meaning!

The word “Philosophy” is derived from Greek, where the word “phil” means “love” and “sophy” means “wisdom” For many scholars, this word has been interpreted into the love of wisdom. I would like to suggest that the two words retain their original essence but become fused. The would “philosophy” would be love = wisdom. Where love and wisdom have the same value and therefore love is to wisdom what wisdom is to love. Philosophy would be the sum of the parts. These two words (love and wisdom) will ultimately be the pillars by which we create philosophical statements and meaning in our lives (through activities and experiences).

Many people have a so-called philosophy of their life or business or even state. South African’s government philosophy is “Ubuntu” which in translation is an ancient African word meaning 'humanity to others' and can also mean 'I am what I am because of who we all are'

So, in assessing South Africa’s government philosophy, we could perhaps assume that the “love” portion of our country’s philosophy would refer to “humanity to others” but the wisdom bit seems to be pretty thin. My criticism of the word “Ubuntu”, that South Africa holds as their philosophy, is that there is no definition of what wisdom will be followed, what type of love will be encouraged or a definition of the values / ethics of the country. The statement is very short and can lead to much mis-interpretation. For instance, what do we share? Shacks, fancy cars, corruption?

What is “who we all are”? We have 11 official languages, multiple religions, multiple races, foreigners and a great divide between very rich and very poor. So what is it that “we all are”? Other than actually physically living on the land, there is no defined common thread or set of values in our country. How is it humanly possible to understand and live a philosophy that, in essence, has no value to the people? It actually makes it sound like South Africa has a slogan rather than a philosophy. We could have well learnt it from “Nike” ... “Just do it”! Perhaps that would have been a more appropriate philosophy in our country!

“There will be no end to the troubles of the state or indeed, my dear Glaucon, of humanity itself, until philosophers become kings of this world, or until those who are now kings and rulers really and truly become philosophers.” Plato


So perhaps in the coming elections we should look past the slogans and try see if there is any "meat" in the proposed promises of our politicians. Should we not rather find someone who has the essence of a government of meaning (love and wisdom) and not just one who has a lot of nice words to say.  Perhaps we should insist that they give us their philosophy of how they will run a country on our behalf. Ultimately we are the ones to choose who it is that is going to represent our lives, values and meaning in South Africa. Do you think any of the people that are running for elections have had a "life of meaning"? Ones who cares for our vision, our values and our mission for the good of the people in the land.  For me only Mandela stands out and that is pretty scary in light of our future prospects.

What are your thoughts...

Wednesday, March 30, 2011

Just rolling!

So much has been going on in the last few weeks. It looks like there may be a possibility of getting sponsorship for the Brain Tumour Foundation - which is really exciting. I am needing help with the website if anyone wants to volunteer! I am also nearly finished the hand out book for the newly diagnosed. WHICH is a BIG need for patients - as some of you may know it is really missing in SA.

Also we are moving forward with the life planning programme - which I am calling a "Life of Meaning" (for now) I am still struggling to name it properly. I am SO excited about it and really feel that it will have meaning to so many people in this life of instant and short term gratification. After a revelation, I have completed a model which I think (hope) will free many people up to live a deeper level of meaning in our capitalist society.

So with saying that... I have started to study philosophy. I am still in the process but I feel that - for the first time - my life has linked itself in all spheres. It has been so liberating and exciting that I haven't slept for weeks! I am looking at issues related to the life of meaning and I can only be grateful (without the cliche) for the role that the (ex)brain tumour had in my life. I don't feel scared of death (not that I want to die or anything) - what I feel is grateful to have more time to live my life fully.

My thought to you would be - what is your life's philosophy and will it ensure a meaningful life to you and those around you? Hard to answer - isn't it!

d:)

Thursday, March 10, 2011

Finally at Houses of Parliament London!

Well 4 months later than expected, my radiation mask is part of the "Behind the Mask" brain tumour exhibition at Westminster. I commend Natalya for her efforts and design of the exhibition. Seeing our radiation masks makes a big impact for so many! Perhaps one day it will come to SA!

Although I was invited to the opening gala, unfortunately the timing did not work out. For more information on the exhibition go to www.btbuddies.org.uk

Monday, March 7, 2011

melancholy ...

Today I did struggle a bit in the morning. My over-zelous behaviour on the weekend meant that at 3am today I was in pain. I didn't know what to do with myself - then James reminded me that I actually have pain killers. So I gobbled them and used my feminine influence to entice James to make me milo to ease the vile taste. He did it - with a grumble - but did it non the less.

I honestly believe that my level of "will" is NOT equally proportionate to my body's ability. James believes that I would be very scary if I was the size of a rugby player! I seem to have a missing link between mental agility and physical ability. Sigh -

So today I was staring at my "To Do" list blankly. I ended up sending out a few quotes for The Grove (which is a good thing) but also pondering the year. Will I be able to get the BT Foundation off the ground, how will my coffee shop go, how do I promote my book and talks better?

I sat down and got quite discouraged that once again my "will" and my "physical" ability were not equal. It is almost paralysing. About 3 weeks ago, my mom and I ran a programme for one of the corporates called "Life Planning". I feel that with a bit of tweaking it can be a highly beneficial programme. Once again my thoughts were tested. So in my melancholy state I reflected on SO many things.

I have a life motto which has come out of my journey and that is "DECIDE to live" This is something that I HAVE to put into practise as I believe we have to walk what we talk. My mother's business is in its 25th year and she has the motto "Living the legacy". I thought that the name "Living your legacy" would be great for a workshop.

I realise that as important it is for me to set my goals, my vision and plan my life journey, I know that I need to commit it to God to open the doors where I am to go and close the doors that I am not meant to pursue. Our life is short and we have a purpose to fulfil during the good and the bad days. If I didn't have any challenges it wouldn't be much of a story would it?

Dear God
Grant me ...
the serenity to accept the things I cannot change,
the courage and willingness to change the things I can,
and the wisdom and clarity to know the difference.

Tuesday, March 1, 2011

Belly Up

As if I can't get enough of doctors / hospitals. I went for a minor op today to ensure no babies on the way and tweak my uncooperative ovary.

Of course, as I do, I started the day with some nervous laughter, aided of course by a very amusing woman in the seat next to me. I must admit that this is A LOT less hectic than brain surgery - go figure.

I get out of surgery and ask about 50 questions - over and over again. Until the nurse says I have asked her that already. Then I realise that I sound like Leo on the drive to Walmer Park - asking for some form of book or gadget that will assist him in his shark research.

When I got back to the room my belly was VERY sore. I look about 5 months pregnant and it hurt like hell - which you know is NORMAL! Anyway when I pointed out the gushing blood from the belly button - I got a little more attention. Nothing serious besides the BLOOD! Oh and then - the BED PAN! No not once - twice. On the third time I was like "Whatever I am SO holding my belling and walking to the toilet" Just when I thought my stomach couldn't possible look worse! NEVER NEVER SAY THAT!!

So home in bed tomorrow also with my mac - I'm loving it. Definitely NO going out - I feel like that girl who ate the wrong thing on "Charlie and the Chocolate Factory" and swelled up like a balloon.


Tuesday, February 22, 2011

Leo turns 5!

Leo's birthday is always particularly significant as his age is the age of my diagnosis of a tumour. I am so proud of who he is, in fact all of my children. I love being able to talk and reason with my kids. I have had a sore on my foot for  a week now and it is bugging me. So yesterday I was complaining to myself, while putting the plaster on my sore. Leo looked at it and said

"I don't know why you have a vrot (disgusting) foot? Only old people like granny have vrot feet and you are too young for that vrotness" - Yes, he is only 5 - at least he thinks his mom is young - 1000 points!!

He also said that "All my children ate the cake" - that would be his peers at school!

Friday, February 18, 2011

Granny Lady

OH I FORGOT TO ADD: Dr Dupper said I am lucky to have veins! Apparently radiation effects carry on right through your life. It seems as though my skin is a bit thinner in that radiated area. So am I going to be a Granny on one side of my face? What the hell? I am going to have to swop sides of the bed with James so that he can see my "young" side!

Wednesday, February 16, 2011

MRI results

Well after another nail biting MRI and many prayers while lying in the machine ... the scan results show that the tumour has shrunk even further!! I was so relieved to hear the news and have the ordeal out of the way. I was really trying to avoid it, primarily because I was scared of bad news. Now I realise that it is just so much better to tick it off the list rather than let it become a burden and distract you for your goals.

While lying in the MRI machine, I went through a serious of "what ifs" There are so many things that I want to do and achieve that it would be such a blow to hear anything but good news.  It just made me realise how much our health is a deciding factor in our abilities - but on the other side - when we do have health on our side, we should make the most of it. That is exactly what I intend on doing.

So now I can put it completely out of my mind until August. What a wonderful feeling of relief! An OF COURSE I am so blessed and grateful to be reminded that my gift of life is still glowing.

Monday, February 14, 2011

Scan tomorrow

Well I have made the decision to have the check up MRI tomorrow. A scary concept as always. The main reason for doing it tomorrow and not putting it off till after the exhibition is that this weekend my artery / vein is budging out on my left temple. To say this whole thing freaks me out is an understatement.

So we will see what tomorrow has in store for me! Sigh...

On a lighter note, Saturday we had a tea and I gave a talk. It was just a lovely atmosphere. I must admit I was totally exhausted after that.

This week is proving to be another busy one and I am hoping to somehow get the BTFSA sponsorship and pamphlets sorted out. It is a lot of work for one person!

OH AND OF COURSE : Happy Valentines Day!

Tuesday, February 8, 2011

Updates

The weeks just seem to fly by without me noticing. Nancy is out of surgery and all is well. She is experiencing the usual symptoms after surgery - fatigue, swelling, bruising and anti climax. BUT all is good and that is the main thing. She is just waiting for her biopsy to come back.

Dr Morkel returned my call on Sunday evening to commend the efforts with the brain tumour foundation. He mentioned something quite interesting, he said (in my interpretation) that patients are needing basic support and information. For example, when patients have flu they call their neurosurgeon worrying that it is related to the tumour. I was thinking how true that is. So one of the things we need to do is set up a forum where people can share information and assist with questions where possible.

We have a logo for our foundation! I thought it was very clever as it shows people putting their heads together, it is a variety of colours like our flag and in the centre it has a white dove. The logo was designed by Marcos Adri·n Echeverr√Ća Paredes as a free download and modified for the foundation by Jamie Bell of Fury Fighters.


I have also done a sticker for our BT Survivors!!


Monday, January 31, 2011

Thinking of Nancy

The lady I met at Blanco (Nancy) is going for surgery tomorrow. I would just like to ask all to think and pray for her. For those who have been through it, you will know how scary it is.

I feel that she will be fine, Dr Morkel is operating and we trust that all will go well!

God bless Nancy
Lots of love d:)

On a lighter note : for those who have read the book and know about Dan, here is his video of him skating on an ice covered lake. He has promised me that next time he will actually talk and introduce himself! He also says that he will try make it more exciting next time!

Tuesday, January 25, 2011

Vuvu & Zela

The weeks have just rushed by. I spent a bit more time developing the website than I thought it would take! But getting back to my programming roots was a lot of fun! Although I can't remember the words often so I have to look them up!

I would like to have the first meeting soon we will see what time dictates!

I got two puppies siblings - their parents are fox and maltese mix. They are SO tiny and SO cute! Their names are Vuvu and Zela (like Vuvuzela!!)


Tuesday, January 11, 2011

Officially opened support group 11 Jan 2011

Today is when I officially start the SA support group for brain tumour patients and supporters. I liked the date too! What a long journey it has been to reach this point. For this reason, the foundation makes it worthwhile. I am so passionate about it but I am an absolute layman.

Many of you may know that there is next to no support for people diagnosed with a brain tumour in South Africa. My journey started pretty much in the dark while spending much time leopard crawling through the internet. For those not attached to Google, I really wonder how they cope.

The primary things I want to focus on are:

  • providing each patient with a complimentary "Brain Box" consisting of books, information, supplements, sponsor gifts and support information.
  • each brain tumour survivor to complete a questionnaire so that we can build up a database of similarities.
  • travel around the country, setting up support group meetings, meeting patients and giving motivational talks. (which will also promote my book and hopefully earn me an income!)
  • running a national exhibition (if I can get BT Buddies in SA)

As this will be an NGO, I will have to rely of raising funds to make this possible. I plan on connecting with all doctors linked in someway to brain tumours. I will be looking for sponsors and will ensure that they receive exposure through this process. If you know of any businesses who will benefit from this type of exposure, please contact me directly.

As I am pretty much alone in trying to get this all done, I would welcome any assistance that will help me achieve the objectives.

PLEASE if you are a brain tumour survivor, supporter or know of a brain tumour patient, I would love your contact information.

My contact details are deirdre@greenvalleyestate.co.za or 083 380 3725. Please send me an SMS if you can't reach me via phone.

Wednesday, January 5, 2011

Bring on 2011

Well the past week has been quite amazing! On Friday (New Years Eve) we just casually decided to look at a house we saw advertised. James & I walked in, each took a browse then met at the entrance and simultaneously said "yes". What was funny is that we didn't even think of buying. The house has been on the market for a year now and it surprised us that it hasn't sold. There is a bit of work to be done to modernise it but nothing hectic! I said to James that we could have got the house last year already. He pointed out that we have now got it at a reduced price.  We still have to arrange finance and have a couple of months to do that.

So... we moved in on Monday 3rd! Yes that quickly. New Years day - what a great way to start the year. I think that the  estate agent has never seen something happen so quickly. We have finally finished painting and moving. I only have a couple more clothes to unpack but that is about all. We have just about nothing in the kitchen as it is still at The Grove! - Sean's gonna have to help with that. Now we are around the corner from Leo's school and only a few minutes from Adam's.

Sean & Teresa have moved in next to The Grove and will manage the operations but I will still oversee the "Big Picture".

I am going to take getting the brain tumour support group and data group onto full speed - God willing of course! This year I am praying for blessings to pour down.

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