Deirdre Kohler - Blog of a brain tumour and life

2012 - the way forward

2012-01-09T10:40:00.001+02:00

So we are now in our second week of January 2012. It is crazy how quickly time goes! This year I plan to get back to work and get some routine and stability going. I will still be attending functions for the Brain Tumour Foundation as a part time contribution to the community. I love writing and painting as a creative outlet - I feel is essential in balancing my work and stress. I still look back at what I have been through and just have to thank God for the new life I have been given. I can honestly say that, not only am I feeling healthy but, I have my strength and drive back.

As part of my studies I have been reading Marcus Aurelius Meditations and have found it inspiring to find a kindred spirit from 2000 years ago: (For those who don't know he was a Roman Emperor and considered one of the "good" rulers.

"No: if you have taken a fall, come back again and be glad if most of your actions are on the right side of humanity. And love what you return to. "

"So there are two reasons why you should be content with your experience. One is that this has happened to you , was prescribed for you, and is related to you, a thread of destiny spun for you from the first of the most ancient causes. The second is that what comes to each individual is determining part of the welfare, perfection and indeed the very coherence of which governs the whole."

So for the New Year of 2012 I wish you all strength, endurance, simplicity, health and reward.

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

2011-12-21T12:24:00.000+02:00

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:)

Good Week

2011-12-02T16:30:00.002+02:00

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:)

In Cape Town... Again!

2011-11-21T07:43:00.001+02:00

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.

Brain Tumour Foundation of South Africa: WSSFN Congress Cape Town

2011-11-17T10:17:00.001+02:00

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

A second opinion - irapid consult

2011-11-13T07:15:00.003+02:00

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 ! |

iRapidConsult.com

Patient: Deirdre Kohler

Submitted on: 11/10/2011 2:18:37 PM

Uploaded file: MRIReportDKohler.zip

Reviewed by: Garnette Sutherland M.D.

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

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.
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
Cairncross JG, Macdonald DR Successful chemotherapy for recurrent malignant oligodendroglioma. Ann Neurol 1988;23: 360-4.
Yan H, Parsons DW, Jin G, et al. IDH1 and IDH2 Mutations in Gliomas. N Engl J Med 2009; 360:765-773
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
Shaw EG, Scheithauer BW, O'Fallon JR, et al. Oligodendrogliomas: the Mayo Clinic experience. J Neuro- surg 1992;76:428-34.

MRI Results November 2011

2011-11-03T13:47:00.002+02:00

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)

There are post-surgical changes in the left posterior parietal lobe with post-radiation changes in the white matter.
No recurrence of the glioma
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:

MRI booked!

2011-11-01T11:58:00.001+02:00

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...

Book review

2011-10-28T11:45:00.000+02:00

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.

"Hello Doctor"

2011-10-26T06:32:00.000+02:00

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.

Successful Brain Tumour Awareness Tea Party

2011-10-24T11:09:00.003+02:00

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!

Time to be a doer

2011-10-18T14:54:00.001+02:00

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!

Upcoming events

2011-10-06T11:27:00.000+02:00

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

Tribute to a friend

2011-09-29T13:16:00.001+02:00

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.

My blog... an old girl

2011-09-19T21:15:00.001+02:00

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.

All about the hair

2011-09-17T21:37:00.001+02:00

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

2011-09-17T20:47:00.001+02:00

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

Back in the saddle

2011-09-05T22:55:00.000+02:00

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.

SASMO / SASCRO Congress

2011-08-27T22:06:00.000+02:00

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...

Girl interrupted!

2011-08-16T08:28:00.001+02:00

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!!

Tick Tock Tick Tock

2011-08-08T19:19:00.000+02:00

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!!"

Brain Tumour Foundation of South Africa

2011-07-05T09:12:00.000+02:00

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...

So now what?

2011-06-27T16:46:00.000+02:00

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!

Oncology Conference in South Africa Sun City

2011-06-16T20:41:00.000+02:00

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!

The Golf Ball in My Brain: Race for Hope 2011

2011-06-08T20:24:00.001+02:00

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:)

Philosophy of money vs wellness

2011-06-07T20:02:00.003+02:00

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.

Brain Injury and Brain Tumours

2011-05-28T15:31:00.000+02:00

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

2011-05-28T11:35:00.000+02:00

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!

Inspirational Talk

2011-05-22T19:17:00.000+02:00

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!

Flu...

2011-05-12T20:26:00.000+02:00

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:)

A Philosophy of Life

2011-04-25T08:30:00.002+02:00

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...

Just rolling!

2011-03-30T13:21:00.002+02:00

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:)

Finally at Houses of Parliament London!

2011-03-10T21:45:00.001+02:00

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

melancholy ...

2011-03-07T20:07:00.001+02:00

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.

Belly Up

2011-03-01T20:07:00.001+02:00

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.

Leo turns 5!

2011-02-22T21:11:00.000+02:00

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!

Granny Lady

2011-02-18T10:40:00.000+02:00

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!

MRI results

2011-02-16T20:32:00.000+02:00

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.

Scan tomorrow

2011-02-14T13:26:00.001+02:00

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!

Updates

2011-02-08T20:04:00.001+02:00

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 EcheverrÌa 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!!

Thinking of Nancy

2011-01-31T20:43:00.001+02:00

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!

Vuvu & Zela

2011-01-25T06:57:00.000+02:00

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!!)

Officially opened support group 11 Jan 2011

2011-01-11T06:55:00.000+02:00

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.

Bring on 2011

2011-01-05T22:04:00.001+02:00

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.

Meeting someone

2010-12-25T19:01:00.000+02:00

It is so ironic how life works. On Thursday I met someone here at Blanco. She has a brain tumour and was diagnosed just last week! What a co-incidence, she also lives in PE. The story is that her husband is on contract here in South Africa but they are actually from Peru. They were thinking twice about coming to Blanco after hearing the news but decided that perhaps it would be good to just have a break.

When I found out that she has a tumour, I felt that I MUST talk to them and approached them directly. I gave them a copy of the book and over the last 2 days they have been reading it together. We have spent much time over dinners and lunches chatting to them.

As I have said, I feel that this is where God is leading me and this is just a wonderful example of it.

Leo @ Blanco

2010-12-21T15:33:00.001+02:00

Here at Blanco the kids and adults eat at different times and venues. This is a problem because Leo honestly deep down in his soul does NOT believe he is a child. Last night after many explanations, debates and bargaining, Leo ended up in the kids lounge. He wouldn't look at me when we went into the room to fetch him. He then asked why God takes so long to make him big.

Today was totally different .... firstly he is not a morning person and was very perturbed at being woken at some early hour (7am) to go to breakfast. He usually only eats at 10. By the time the lunch came around, in different rooms, he was not going to take it lying around and broke down shouting "I WANT TO BE A MAN!!" I was both amused and heartbroken. I then had to spend the afternoon trying to explain to him why it is nice to be a child. (I had to dig deep) James and I took him to get an ice-cream which softened the blow and he fell fast asleep. I think this whole dining room, early mornings and not being "a Man" thing was just too much for him. Just before he slept he said - "Can we just go home now, I am finished with holiday"

Anastasia and Adam have been playing pool, table tennis, swimming and "chilling" and only got into bed at 12am this morning. They are trying to beat me at all these games and as of today I am still ranked tops in the indoor games. I did feel a little dizzy and my hands started shaking from all the exercise and decided to go for a nap at 11!

Time for another afternoon nap now - we aren't "allowed" to use technology in the venue apart from our rooms so this is it... I sneak it to do a bit of catch up and make a couple of calls!

A change of plans...

2010-12-18T23:37:00.000+02:00

I am always scared to say something because inevitable plans change. We will be open over Christmas but James & I are taking the kids away for a holiday to Blanco. They had a cancellation about 30 minutes before my call this afternoon. They are generally very booked up. I think it would be good to have a break from it all.

Sean and Teresa feel they would like to run something on that day. So I leave it up to them! Quite a bold move to let your baby sleepover with someone else for the night - but a relief non the less.

Today I had a headache - I think it might also be a bit of tooth ache as well as a bit of family quarrel. This, I suppose, to be a occasional occurrence in most families - but not nice to say the least.

One Year at The Grove

2010-12-17T18:51:00.001+02:00

On the 15th of December we celebrated being open for a year at The Grove. I can't believe I actually made it! We have had some hard times and some really good times. I have learnt a few things along the way. There are things that I don't like... accounting, shopping for food, cleaning and grumpy people. Things I love ... the parties and celebrations, the open spaces, good food and a family feel.

There was one particular old lady, that came with a group, who really needed a better attitude! Bear in mind that I really DON'T make any money out of these functions and it is more of a donation than anything else. She was so difficult that we took turns in serving her because EVERYTHING was wrong. I wanted to ask her to leave she was so annoying. I kept quiet (as one must). Eventually Paul (my brother) said to me that he could put her out of her misery. Of course that make us all laugh and feel better.

Isn't it sad that she have managed to live a full life and in the last days she is so BITTER. Everything is a problem and a complaint. Everything gets criticised. Everything is an effort and nothing is good enough. And most of all she doesn't look around her and see where she is and those who are serving her. Yes, that is SAD.

I have learnt a lot from the old folk and I do enjoy talking to them. It is quite strange that they always in a rush. Paul's theory is that "They don't have long to live!" Perhaps we should live it up while we still around too!

Only a few days to go till Christmas. We will be having a family dinner at The Grove... I "plan" to sleep in on the 25th! (we are closed) This year I am going to plan 2011 to the best of my ability!

Adam Valedictory

2010-12-08T14:51:00.000+02:00

Well Adam finished junior school yesterday! It was a lovely service and then the mom's enjoyed a lunch with their boys. It is traditional that the boys have a swim in their school uniform! Which delighted them!

I really can't believe how quickly the time has gone...

Book signing 10 December

2010-12-06T21:10:00.000+02:00

Join me for complimentary snacks and cocktails on 10 December. Let me introduce you to the book and share stories.

December!

2010-11-30T22:16:00.001+02:00

Tomorrow we are entering the last month of the year. To say it has gone quickly is an understatement. I am now facing my normal fears and opportunities for the year to come.

I have to look around and ask where this experience is leading me. It is quite scary to know that I am going to go into the New Year with no formal income and James scaling down his operations. It is an absolute walk in faith. I know, however, that God has given me tools like my book, my coffee shop, talks, James' talent etc to work with. Now it is time for opportunity. I do believe I am lucky in life. So now I have to send my requests for a GOOD YEAR.

I've been thinking about what it is that I would like to do that would really make me happy. Many people say that we all have a passion that we should pursue, but I have SO many things I enjoy doing and don't want to only focus on one thing at a time. I am hoping that something will turn up to be more prevalent both in income and significance next year.

I have met so many people through this book who have had some experience. It has made me realise what a huge need there is for someone to talk to. I must say that I don't feel qualified to answer questions or give advice - I don't have much tact and tend to be too opinionated. But if you are looking for straight talk then I will be happy to answer you.

Another thing that has come out of this is that I don't really like talking about the brain tumour since I put it in book form. It is the strangest scenario. I am finding my own story a bit boring (remember I have read it 1000 times!) and like to hear more about others. Even blogging is difficult and it is something I absolutely love to do. I will just have to find another topic. So I think a website update is inevitable!

Leo has discovered an iPod! It is amazing to see how quickly he picks it up and navigates it. Father Christmas is coming to his school tomorrow so Mommy Christmas is gonna have to organise some gifts! Adam is in this last weeks of junior school and Ana may move to another school next year! So it seems like all the kids will be in different schools next year...

Last night we had a function at The Grove. I really do love the parties and celebrations! (but what a lot of work it is)

I will be doing my LEAST favourite thing tomorrow and that is to see the Dentist!

Birthday

2010-11-25T11:32:00.000+02:00

Today is my birthday. As usual it is filled with mixed emotions, generally I don't like having a birthday! Mostly because I find it a bit disappointing. This year knowing I am 35 is a bit of a shock! Life is just too short. I feel like there is just no time to get things done! I am in a constant rush to meet my goals - to my own detriment!

So today I've had to think long and hard about being grumpy on my birthday. Even though I hate the prospect of turning old and wrinkly, I have to admit that I am happy to get through another year!

Comments from the book

2010-11-16T10:49:00.000+02:00

Well I think it is time to revamp the website... the days have been SO busy. I have had very good responses from people reading the book and it is so encouraging. Like I have said before, it is very scary putting your personal life and feelings out into public domain.

I love the feedback, good or bad (good is preferred)! As you may have realised, "Brutal Honesty" is best. Please leave your comments on what you think of the book! Appreciated...

Thank you everyone for sharing this with me...
d:)

On Algoa FM

2010-11-10T13:48:00.003+02:00

Well I was honoured to be invited to talk on Algoa FM today. Thanks to Lance the DJ (www.algoafm.co.za) and Ed (edlunnon.wordpress.com) who speaks every Wednesday between 10:30 and 11:00. Ed suffers from Corticalbasal Degeneration (CBD), a rare neurological disease. Thanks guys for hosting me!

For those who wish to purchase the book, it is available on Amazon, Kalahari, Exclusive Books etc

BUT I am offering a special of R130 if you order from me directly (South Africa Only)

www.fogartysbookshop.co.za are also offering the good price for the book and will be available during my book signings in PE.

How much my life has changed... those of you who have followed my battle will know this!

My book signing!

2010-11-09T21:23:00.002+02:00

Snowballing into Christmas

2010-11-08T16:09:00.001+02:00

I can't believe how quickly this year has gone. It is strange, when I was going through my treatments, my goals were just to get out in tact! Now I have to look at the bigger picture and it has all of a sudden become really hard. I prayed about it today and just asked God to make it a bit easier and guide me. I don't want to feel like I am struggling anymore. I sound like a baby but I do think I have good cause for feeling like that!

The other day I met someone that had read my book. I don't know him particularly well. He started chatting about some of the things in the book - then I realised HOW PERSONAL writing is. I might not know the person, but they know a lot about me! I also don't know much about that person so that makes things uneven.

Never in my wildest dreams would I have thought I would be writing! But here I am and WOW what a lot to learn.

I am feeling fine which is a good thing - when I talk about the tumour I find it more scary than just knowing. I just keep praying that God will bless me with a long life and thanking him for it.

A glass of wine

2010-11-05T18:11:00.000+02:00

I am happily sitting here with a glass of wine (diluted of course) and I can slowly feel my muscles relaxing (including my eyes) Last week I had a glass of wine and passed out only 25% down the glass. I fell asleep for 10 hours, in my clothes, I didn't brush my teeth or wash my face. I couldn't believe how absolutely tired I was.

So now I have decided that after another busy week, I will do the same and already I can feel the effects. I have also realised that going off my meds for a few days didn't help my moods (had to go off for a bit from the vertigo) I do think I suffered from a bit of withdrawal. I definitely felt my crying come on faster than normal. I am on a lower dosage and today I got a bit worried because I felt like I was going to have a seizure. Poor James has a druggy for a wife! I suppose having wine is not a good thing when you feel an aura! Also I got hit with a headache - which ironically the wine helps with!

I have decided to start a support called "My Brain Matters" for all of us wondering out there in the dark! So all of you who have brain disease, helping someone with brain disease or want to help in anyway, please email me: deirdre@kohlerprojects.co.za

The purpose of the group would be to bring people together to share their knowledge and questions with fellow members. There isn't much help out there so lets try support each other, answer questions etc!

Trying to take a break

2010-11-01T16:12:00.000+02:00

I haven't gone to UK - yes it is very disappointing but I actually don't have the energy to fight anymore. This past year has been tough on so many levels. I think when you are under financial strain it just magnifies the stress.

The vertigo is definitely better after I lowered my medication dose. I must be honest, I am still a little shell shocked by the whole episode. I wish I could relax but my mind just constantly goes in loops and "To Do" lists. If anyone knows how to delete a "to do" list from a woman's mind, please let me know.

I met someone from CT, Sarah, who also has a brain tumour. It was nice to catch up. It just makes me realise how little is available to us here in SA. I am fortunate because I spend so much time on the net that I can swim my way around better than most.

I have also realised how needy I am of the internet and blogging as a form of expressing my feelings. Whenever I get upset I seem to rush for my laptop.

PLEASE SUPPORT MY BOOK! Now that it is ready!!

Bad news

2010-10-28T22:16:00.000+02:00

I heard this evening that the exhibition has been postponed indefinitely. This was quite shattering. After the hard time I get getting to this point, it is terrible to be disappointed like this. I feel like I also have let everyone down. I suppose it is another reason why this is not a good idea (duh)

I just don't know what to say or to do. Now really isn't a good time to going on an expensive holiday.

"Dispair"

My book is printed for what it is worth! :( :)

Nearly there!

2010-10-26T10:24:00.000+02:00

Well my tickets are booked, my passports have arrived, so now I am just waiting for my UK Visa. (A very important thing in this trip!) I still have this flu thing and the vertigo (in my opinion) is definitely due to the anti-seizure meds. Every time I take one, within 40 min I start rolling around like I am crack or something.

So after contacting Dr Butler, he has reduced the medication. Then there is the other problem that this will increase my risk of a seizure - which is really bad timing considering I am off to the UK this weekend (visa permitting)!!

I am looking at this as a working holiday. Which between the talks, travel, exhibition and book, I don't think anyone could argue this fact. Not normal earning work but rather something that requires my attention. I have this continuous need to think of ideas / goals and aiming for them. It is to my own credit and demise. I said to my mother yesterday that it is so frustrating that my body doesn't co-operate with my will. I cannot stop the creative side so by body stops it for me!

There is so little happening in SA to support Brain Tumour Victims. It is actually quite scary. This fact, combined with the relatively small research funding on brain tumours verses other cancers, makes someone being diagnosed left totally in the dark. In chatting to James this morning, I said to him that most people who hear you have a brain tumour think that "this is the end" This causes an apathy towards helping patients heal. I must be honest, I thought this way about people with liver cancer.

So I hope this trip will give me some ideas of how to help in South Africa.

Vertigo Panic

2010-10-21T13:47:00.000+02:00

Well the arrangements are in swing for the trip and the weeks are no less than FLYING by. We are still trying to get our Visas sorted out, man everything requires more time than you think! So yesterday I just prayed and said to God that he needs to take control of the situation.

SOOOO... last night I got the worst vertigo and even battled to turn in the bed. My stomach started cramping really badly along with its twin, nausea. I felt my brain holes (which as some of you may know, I use as a gauge) and they were slightly more swollen than usual. I went into a flat spin imagining brain surgery and chemo standing at my front door. Needless to say my prayers went something like this "Dear Lord, I only want to die when I am really old - and without pain"

At about 5:30 I spent a bit of time thinking it through. Wondering if I should cancel my trip etc etc ... THEN I REMEMBERED. The late Mark Miller's blog had an entry about a year ago where he described the same symptoms. Apparently it is a side effect of the epitec I am taking. When the toxicity levels in my body get too high, then the body fights back. Thank goodness I read that post and he shared it with us. Another good thing about the blogs - even after I have been battling with the losses.

So like I said, I am now in rehab (that being my bed) with nothing to do or eat (don't tell my mom I am on the computer). I don't even get "happy" recreational drugs first to make this fair.

Every time I get up I have to hold onto something.

Oh dear ... all in a days work!

Still here

2010-10-15T16:00:00.000+02:00

Every time I check on a fellow brain tumour blog I get more and more depressed. There are some of us that are still fighting fit and others that are slowly going down. I take it absolutely personally.

I got bad news today. The money I have been waiting for, from the sale of my house, has yet again been delayed. I actually burst into tears, to the shock of the staff. I have been on a knife edge financially (as I am sure many of you have) and was planning to use the money to pay for the tickets for the trip to the UK. It seems like everything has just been so difficult this month. I slept for 4 hours yesterday from pure exhaustion.

I have LOVED giving the talks and feel that is what I should be doing. Can you believe that for the first time since my operation, I actually watched the video my mother did of the first week in hospital. I am going to try get it onto You Tube. For the first time I saw James walking behind me hiding the tears.

Watching people die (online) is HORRIBLE. So even after a hard couple of months, when it comes down to the very core, I am still here and just have to thank God for that.

Fashion Show

2010-10-14T22:08:00.000+02:00

Last night I was invited as a guest speaker in a fashion show to raise awareness for cancer. My talk was much "lighter" than I normally do - considering the function. I had such a good time. Finally I was a ramp model! ( I had to give my talk from the ramp) I am so short that I was only slightly taller than the average sized folk - even being was on the ramp!

Talking about it is so strange, the whole thing is bit of an out of body experience. I can't believe what has happened in the time since I had the tumour. It was amusing seeing the audience gasp when they saw the size of the tumour on the screen. I have a bit of a wicked sense of humour!

Today my mom pulled up a video that we did when I was in hospital. Do you know that I haven't actually watched it (yes ever!) So today I had a look at one of the videos. The thing I noticed today in the movie was James' face when they were pushing me into surgery. It just reminded me why I love him and that I am loved. I also noticed I am looking a bit older these days! NNNOOOO ...

Thanks to Lindy and Gareth for organising the function. You can look up blushing bride on facebook for more info...

What to do

2010-10-03T21:38:00.001+02:00

I was chatting to James... saying that it is really hard to run my blog now as there is not much brain tumour stuff to talk about. Sad but good for me! I have been looking at a couple of the blogs that I have been following and got more bad news today about a blogger who died after a long fight with a brain tumour! SO not having any news is definitely a good thing. I really hate brain tumours (I think this is probably the first time I have said this online) The last couple of months I have been pretty preoccupied with work, coffee shop and talks.

I am wondering where life is leading me these days. So much has happened since the tumour and so much more good than bad. It does sound like a clique. I have done so much more than I every thought possible. This is probably because the fear that we have in changing our lives disappears. Your illness tells you, in no uncertain terms, that you HAVE to change.

I am really looking forward to going to the UK at the end of this month. We have big plans to travel around the world. Sometimes I do wonder if what I have been through is for a higher purpose. I suppose we all wonder "meaning of life" questions. I do believe that God leads us. We just have to get onboard! Perhaps getting sick means you have absolutely no control over your life and hence you don't have any problem with being lead.

BTW Leo told me he had a headache in his bum (had a bit of gastro!) - I think he is hearing way too many "brain" references! LOL

Uniting People

2010-09-25T19:37:00.000+02:00

I will say, that the more time I spend on blogs, I realise how much it brings people together. Society tells us that we don't talk to each other anymore, I don't believe this. I have been able to be in contact with people from all over the world who are experiencing what I have been going through. I have also realised how lucky I am in my journey when I read about the trials others have gone through.

I know some people might say that what I have gone through is also pretty hard (I agree) BUT I have such a good support base.

Another thing that has really struck me today is how many of us have found a higher spiritual journey. Personally I have questioned, cried, pleaded and thanked God in my quest to have a relationship with God. I know the promises He has given me and everyday I ask Him "meaning of life" questions. (kinda like the questions Leo asks me) I still don't understand much.

I read a blog tonight about a Jewish lady who is struggling with a brain tumour, lung cancer, breast cancer ... can you imagine? Besides the hardship of her story, she has a relationship with God. Not only have our trials joined us, but also our belief in God - beyond religious differences. Isn't that what all religions are meant to be about "Love thy neighbour as you love thyself"

This is why I believe that we all have the right to a personal relationship with God without the judgement of others. Wouldn't this solve so many problems?

Book Release

2010-09-20T21:21:00.000+02:00

Well FINALLY my book is at the point when it is going to print! Yay Yay Yay! I am having a few copies posted to me for review. I can't tell you how excited I am. It actually feels unreal!

Talking about unreal ... about two weeks ago, someone(s) broke through our gate. What happened... I needed to go to the bathroom at about 11:30 (not usual) I dragged myself out of bed and as I turned the light on, I called James and said "I hear a car" Now we have 2 gates. A small one and then about 2 car spaces to the big one. Our bathroom is very close to the large gate. He looks out of the window and says "There are a lot of OSTRICHES!" NO I AM NOT MAKING IT UP! We looked out of the window and there they were 14 ostriches. When I had turned on the light, we think it scared the thieves off and I just hear the car pulling away.

James wondered around with his rifle and I tried to use the local farm radio ... I had no idea how to do the "foxtrot charlie" thing so I eventually just said "HELLO can someone help, we have a few Ostriches ..." One of our neighbours thought I said "Sausages" and wondered why I was putting that on the radio. Farm patrol, nitres security and the police all came. They couldn't really do anything because nothing had been stolen and in fact we had ended up with "free" livestock. It turned out to be my neighbours ostriches. The thieves had tried to use our gates as a holding pen till the truck arrived.

It is the first break-in that i know of that someone has actually left something instead of taking something!

I think God has given me interesting Angels to watch over us - that have a bit of a sense of humour!

Here is my latest commissioned painting - delivered last week!

What it is like living with a brain

2010-09-15T21:40:00.001+02:00

Well I decided not to add the "tumour" word to brain today. It does get a bit tiring thinking about it all the time! The past few weeks I have been very busy. I have had a couple of talks, travelled to JHB, worked and been running the coffee shop. SO all things considered I got a bit TIRED today! After a good 2 hour afternoon nap I am back online! People don't really believe me when I said I had a brain tumour!

My frustration, at the moment, is my book. It is SO close to being printed but there is always just another thing to do before I get there. The other thing is that I really want to organise my trip to the UK and the money I was expecting from the sale of my house is tied up between strikes, lawyers and deed of sale transfers. SO I am needing to make some kind of plan. VERY frustrating.

I have been thinking so much about where my life is going lately. Old Mutual is hosting two talks for my next week, one in George and the other in PE. I really do enjoy the talks and often amazed that people think it is inspiring. Honestly I don't think anything has been amazing. I am SO excited to FINALLY see my book finished. I have dreams of travelling around doing book launches!

Sometime in my life I am going to need to pay a visit to the dentist! I joined dance classes and haven't even gone yet! I have such good intentions ... sigh! Oh yes, I have just finished and sold another painting! It was very liberating!

Brutal Honesty - Talk

2010-08-26T14:31:00.001+02:00

Well I am doing a talk on the 1st of September! It is a breakfast 9:30am for 10am. It costs R45 per person. It seems to be a motto : why sleep when you can work! It does make me laugh!

Brutal Honesty - Book cover photos.

2010-08-21T16:39:00.000+02:00

I had a make up and hair day on Thursday and my mom and dad took some photos... I will be using the first one as my book cover. (amazing what a bit of make up can do!)

Shock Memorial Service

2010-08-17T20:45:00.000+02:00

I have to say that I am shocked and incredibly saddened by reading a blog today. I have followed www.markmillermusic.org blog for the past 1 - 2 years. I have not been on the website for awhile due to being busy (as I am sure many of us know what that is like)

I went on today and saw that he has passed. I must be honest, it is really hard to see people with the same condition as mine dying. It happened so quickly! He put up a good fight.

The quote on his blog when I looked at it today said:

'When I stand before God at the end of my life, I hope that I would not have a single bit of talent left, and could say "I used everything you gave me" Erma Bombeck'

Rest in peace.

Busy with my book

2010-08-17T09:58:00.000+02:00

I am giving my cover a bit of thought and need to have some photo's ... I would share an except with you from the book:

“...I do struggle to think that James will be with someone else (even though he says he won’t / cant) Realistically he would be young and would need someone. It is my belief that we have soul mates in life and at some point we are together again. I feel like this would be challenged if life is shared with another (stupid I know) I am also scared that there is nothing (which I don’t believe but its hard not to think about it)...” Deirdre Kohler

“...several times during Sandy's last year of life she told me, "I want you to love again. Being with someone else will not take away from what we had... Promise me you'll love again." So I lied to her and said I would. And as time goes on, I know for certain that once you've found your soulmate, that's it. The thought of someone "replacing" her never enters my head or my heart. So I apologize to her for saying I would love again...” Dan O’

Newspaper Write up!

2010-08-12T15:12:00.000+02:00

I was in the newspaper today! On Monday I gave a talk called "Celebrating life" where I spoke about the tumour. One of the ladies wrote something and the paper came by yesterday to interview me! I didn't think that it would be on the 3rd page today!

All Good!!

2010-08-05T22:03:00.000+02:00

Well I FINALLY went for my scan! And had absolutely great news!! Everything seems to look good - no growth, stable etc.

On Women's Day I will be giving a talk on "Celebrating Life". I must be honest I am so happy about the results that I really do feel like celebrating! I will be sharing my story since being diagnosed with a brain tumour four years ago... three brain operations, radiation, chemo; visited five countries; had a solo exhibition; written a book; opened a coffee shop…

My book has been sent for printing... I have changed the name to "Brutal Honesty" I will be going to have some photos taken next week sometime!

Susan Boyle and Frank McMahon

2010-07-20T21:55:00.000+02:00

Well my Grandad - Frank McMahon (83) has submitted his audition video for her competition. She is offering the winner to sing "Silent Night" with her to be put on her album. He will probabaly be a bit shy BUT hey! He has nothing to lose and has a great voice. Have a look at his You Tube upload
http://www.youtube.com/watch?v=UWlNRPP-P30

Other than that, things are super busy! I travelled last week and it was FREEZING! -5! The coffee shop is getting busy now. I have a new lady - Gen - working for me now. Hopefully she can get a few things in order. Family is good. I can't believe the world cup is Over?

Still need to make an appointment for my brain follow up scan. I know I know - I have EVERY intention of setting it up this week. Promise.

My hair line!

2010-07-01T21:16:00.000+02:00

Well my hair is growing well... I can't keep up. Today I moved my hair and saw the scar line. Anastasia took a picture for me! What a nice clean scar and it doesn't show because my hair covers it, even over the ear area. Good job!

We watched "Its Complicated" last night and had a huge laugh. Especially when she contemplates face lift surgery and the doc says it will only hurt for 3 months! Made me think of this scar ... one lifted side and one saggy one!

Next scan

2010-06-25T21:20:00.000+02:00

Well I suppose I should go for my next scan soon. I will make an effort to make a booking next week - even though I really don't feel like going. Between the coffee shop and working on another project for a corporate, I am finding very little time to get other things done.

I am loving my new mac book - even though it has taken me a good few attempts to get used to. I am now starting the process of transferring data, contacts etc etc to the mac. To add to my woes, I have changed cell phones to a blackberry so that is also taking a bit of time. My older kids have actually been working at the coffee shop to save up for a new iPad - I must say it looks really appealing. It costs double here than in the USA even with the exchange rate! - shocking.

James & I celebrate our wedding anniversary next weekend and my hair is just about as long now as when we met! It's like we are starting all over again! What an interesting few years it has been!

I have got into the soccer fever. Now being a soccer watcher, I am amazed at how hooked I am. I haven't been "allowed" to go to any games because James is concerned (a rightfully I suppose) about me having a seizure due to the noise and the crowd volume. So on Wednesday, when England was playing, I got very grumpy that I was working while everyone was at the stadium watching the game. (It was in Port Elizabeth) Its at times like this that I really feel how terrible it is to have something hindering you.

The teams I am supporting - Germany, USA, England - primarily because they are the biggest tourist group to SA and I would like them to stay as long as possible!

The best part of the World Cup in SA - all South Africans working together! What a lovely time.

So quiet!

2010-06-04T10:06:00.000+02:00

Well what can I say ... I have been so quiet on my blog! We have been running around like mad people! I am doing a bit of contract work (yes I know - I should take it easy) Every thing just seems to come together at once! I am looking for someone to assist me in the coffee shop...

I am supposed to go for a scan sometime this month. I really don't want to - although I am always curious. I met Dr Dupper - he came to the coffee shop for a snack and he says I should just have it done. Oh the guilt! I suppose I am too scared to do anything. (Can you blame me) My life is going well at the moment.

Soccer world cup is gearing up and we are hoping this will fill up the coffee shop a bit. I am getting into the spirit and putting the SA flag on my car and in the shop! We have actually achived alot as a country - no matter what the outcome is! I hope all South Africans will feel this way!

I would like to hear from you for a change so please send an email or a comment on my blog!

Mothers Day

2010-05-11T19:48:00.001+02:00

I have been so quiet on my blog for a while now. This is for 2 reasons, one I have been running around with the Coffee Shop and the other is that I don't have much news other than work. I actually made a special effort to blog today! We had a very big function this weekend with over 160 people. I was quite frustrated because the heaters weren't operating at lunch time which meant that the microwave was working overtime and the service was slow. I was so upset! Other than that little hiccup, all seemed to go well and people enjoyed the day.

I remembered that I have to have another scan in a month's time. I am feeling so good generally that I only think about the tumour sporadically . It is amazing how our lives swing back. I am still looking at publishing the book but for now it is on the back burner as there just isn't time.

Leo made us laugh out loud the other day. He and Adam were playing outside and after a couple of hours they went inside to rest. As they were lying on the beds, Leo said to Adam : "I am so tired from all that running, my legs are sore and my brain hole is getting bigger" - That from a 4 year old! LOL

Stories from a Coffee Shop

2010-04-29T12:13:00.001+02:00

I have been running the coffee shop for 4 months now! (Wow I can't belive it!) What I have really enjoyed about the coffee shop are the conversations and the social aspect of it. I have heard so many stories, some sad, some funny and others just news.

I thought it would be a good idea to write these down.

It is quite amazing how we live our lives. Often we are going through similar difficulties but we are scared to tell other people!

My biggest problem with running a coffee shop is that my short term memory is so bad! I can't remember from one order to the next. For those who are going to tell me to write things down - I can never find a pen!

But problem solved, I have hired a waitress!

An old diary

2010-04-23T12:43:00.001+02:00

On Monday I decided to have a big clean up! What a huge task. Since we moved into our place the same time as the coffee shop, I didn't really get to sort out my house. It was like a gym session on steroids!!

When I was packing out the stuff I found an old journal. I have never used one and only made one entry. (I started to blog in 2008) It was written in 2002 ... I found the entry interesting (also embarrasing to read) because it mentions my headaches and the stomach pains which I now feel are indicators of a seizure. It was actually written just before I had to go to hospital for stomach pain and dizziness caused by "stress".

"...I feel helpless (about the situation) and I feel that no-one helps me. I know that I get stomach pains and headaches from my worries. I try to hide it most of the time..."

So I am sure that stress agrivates the situation but what I was actually having were seizures!

Book Name - My Brain Matters

2010-04-15T19:33:00.000+02:00

Well James is convinced that I should call my book "My Brain Matters". My mother and daughter are in agreement so I have gone ahead with that.

I have a local publisher interested and I have been in contact with a self publishing house in the UK what have given me a quote. Now I need to decide what would be best for me. I am needing to get exposure and I am not sure how to do that. One step at a time...

What a fun thing this has been! I could do this for a living while stepping in and out of the coffee shop.

I have made a few updates to the website - you will see some new pages at the top links. I still have to fit in a lot more.

I am meeting so many people in the coffee shop. I should really start sharing the stories!

I am feeling good today (besides the nagging cough that I can't seem to beat) I can run my fingers through my hair and have to make another appointment with the hairdresser - whoever thought this tediuos action would bring such joy!!

For all my South Africans - Don't touch me on my studio! (For the rest Google it)

Website update

2010-04-08T19:02:00.000+02:00

I have decided to do a website update (still trying to figure out when) so you will see a few things moving around a bit! I am looking forward to it!

Yesterday was really busy at the coffee shop and it was only Sean in the kitchen, Patricia cleaning and myself in the front. Phew! So my plans of doing a lot of book publishing or spring cleaning went out the window! But I can't complain. It was nice to know that I had made a bit of money!

James and I have started to (for the first time) pray in the mornings before we get dressed etc. We have been doing it for about 2 weeks now. I had prayed for people to come into the coffee shop yesterday and ... it seemed to have worked! Be carefull what you wish for! Shows God is answering!

Still need a name!

2010-04-07T16:36:00.001+02:00

I am thinking of how to publish this book. I am pretty green in this area. If anyone has any advice PLEASE let me know! Also - I still can't decide on a name! nothing seems to stick!

Here is the prologue to my book! It describes what I now know is a complex partial seizure.

Prologue

Why can’t I speak? I think my blood sugar must be low. I should eat. What can I eat? What is food? My eyes are blinking very rapidly. I go to the bathroom. No-one must see me. I feel stupid. It will go away. I don’t know how to lock the door. I sit on the seat so that I won’t fall. If I have low blood sugar, I need to eat, so I look for food. I don’t know what food is. I grab the air freshener and try to spray it into my mouth, thinking it is food. (At least I will have a nice lavender-scented mouth.) Luckily I don’t know how to open it. I experience everything. I am thinking and trying to rationalise what is going on. Although my thinking of what I want to do is there, nothing around me makes sense.

I get tired. I lie on the floor. My eyes are sore and flicker; my head is pounding and the noise is intense. I worry about the baby in my belly. “Dear God please help. I want to get up. I don’t want to ask for help, I feel ashamed. I will just lie here. It will go away. What is happening?”

A bit down

2010-03-23T22:28:00.000+02:00

The past week I have had my friend Sandra with her daughter Ella and partner Sven from Germany visiting. She leaves tomorrow. The time has gone so quickly and there is not enough time to really spend with each other. Finances have been tight, I can see the strain on James' face. Not to mention, the politics is a bit tiring for me after the threatning racisit remarks towards whites.

On another more positive note... the exhibition seems to be going well! Here is the link http://www.btbuddies.org.uk/ and some pictures...

Speaking to the masses!

2010-03-19T12:38:00.001+02:00

Yesterday, I gave my first talk at 'The Grove' to a group of retired folk. (I did speak at my Grannies church last year as a thank you) Basically I told them about The Grove and how we built it and how my whole family was involved in some capacity. 'The Grove' has given us all some sort of work and income potential. This is significant considering how many people were falling over due to the economic crisis last year.

Then I told the group why we bought the farm.

As many of you many know, we bought the farm when I was diagnosed with the tumour. We did this for a few reasons, primarily to combine resources and to help me during the treatment. At the time there were many risks for me, survival being one of them. The kids would need to be taken care of. I wouldn't be able to work as I had and therefore finances were another issue.

So after the talk, one of the ladies asked if I thought I would still have done the coffee shop, farm thing should I not have been diagnosed. My reply - No. This shows me that God does work all things together for good to those that love Him. He has truly blessed me.

After the talk, a woman asked if I have given God glory for how He has worked in my life. (I felt that I have) She also said that she believes that He will use me. Another woman asked me if I would be willing to speak as a survivor to encourage cancer patients going through treatment. I said to her I am willing to help. I can feel that God is moving me in this direction.

See, God does work in mysterious ways!

Busy Busy Busy

2010-03-15T17:57:00.000+02:00

Yesterday at The Grove was crazy. We SOLD OUT - seriously. I only have 3 portions of carrot cake left! We had to eat fish fingers and chicken nuggets for supper ;(

We weren't prepared for it at all! Last weekend we had 2 tables on Sunday and this weekend we had to put people outside. I think one or two people didn't enjoy waiting for service (and that upsets me) But its fresh and there is only so much we can do. Most people seemed happy and had a great time!

I really wish there was an even flow so that I can gauge how to gear up! I was quite tired and am suffering from a headache today. It is so incredibly frustrating to have to worry about my head all the time. Another busy week is in store... my parents 60th birthday party, my friend from Germany arrives today, got old ladies coming for tea ...

Book Finished ...

2010-03-07T12:39:00.000+02:00

Besides one or two things that I want to edit, I will say that my book is done. Now I have to try to figure out how to get it published. Another problem is that I still don't have a name!! How difficult is it going to be - I thought it would have come to me but alas - still not.

The book has quite a few writtings that was not published on the blog. The other writings deal with a some of my emotions during the period. So some of it is funny and other bits sad...

My head has been a bit sore lately. Perhaps it is because I have spent too much time on my laptop!

Another thing, I need a book cover. I was wondering if I should use my paintings. The painting "life" I did just after my operation and might appropriate. (in the design and not necessarily on its own) But I don't know!

Here is the pic...

Adam a brain surgeon?

2010-02-28T16:28:00.003+02:00

Well the other day, Adam (12 years old) and I were chatting. (Anastasia and Leo weren't around so we actually has some quiet time!) We were talking about careers. He said (out of the blue) that he wants to be a brain surgeon! Now Adam is diligent, focused, a bit vague and very intelligent. (We have always referred to him as a nutty professor) One thing in his disfavour is that he cannot handle the sight of blood. A major hindrance to someone wanting to be a doctor. He is like me, we fall to pieces when we see someone bleeding. I feel quite ill just watching a dog cry when it is in pain.

We spoke a bit about what being a doctor entails. I also explained what a neurologist does. We have always believed that Adam should get into stem cell / genetic sciences. He certainly has the "brains" for it!!

Besides all the obstacles involved in being a brain surgeon and whether or not he would still want to do this in adulthood , I was surprised but extremely proud to hear my son say "I want to be a brain surgeon!"

Mask Exhibition

2010-02-21T19:11:00.000+02:00

Today was Leo's 4th birthday ( I have tried to get picture of him but he and Adam are wrestling and I am not to interfere) It really takes me back! It was before I fell pregnant that I had the first symptoms and only when it got worse during the pregnancy did they diagnose me when Leo was 5 months old!

There is an exhibition in the UK to raise awareness of brain tumour patients. for more information go to

I have done up my radiation mask with a collection of photos (of the times I have been through) it has a light in the middle and actually has MY OWN HAIR (the bit that was shaved before surgery) It is a visual interpretation of what's been going on in my head!

What a weekend

2010-02-16T21:19:00.001+02:00

I am realising that I must, in fact, be nuts... this weekend, albeit fun, was hectic. And of course I did have to do two evening functions! What have I learnt? Well having a planned function is good, we were on time, prepared and I could happy act hostess and not waitress. What I won't be doing again is trying to arrange the event myself. The marketing, the disappointments etc is just too much on top of the planning and organising. So from now on, I will be able to host functions, but I won't initiate them!

Sunday was MAD I didn't think it would be that busy! I am in dire need of waitrons.... HELP! During the week it is quiet (except for the 30 grannies coming tomorrow bright and early)...

I have spent 2 days doing my book and my two other websites... One for James (http://cornerstonearch.blogspot.com/ ) and The Grove. So I have been sitting on this chair and feeling the worst for it. But then again I have absolutely no desire to leave!

Here is a great pic of Ana & I on Valentines evening .... Can you see how long my hair is getting!!

Writing a book

2010-02-08T11:57:00.003+02:00

I am sorry to say, I have been lead down a path of cliche and have ended up writing a book. (Not finished but on it's way) Obviously I have a few grammar and spelling issues, it probably comes with the story. Now, I have to think of a name... I have NO idea and everything seems a little cheesy. HELP ME PLEASE

Some ideas I have ... Surviving Brain Surgery - for Dummies, How to Blog during Brain Surgery, Thriving on Vague Diagnosis, A Bad Hair Year, The CEO of a Major Operation, Bad Bad Brain Hole...

The content is a collection of emails, reports, blog entries, notes to self as they happened. The aim is to keep it similar to my style of blogging and with humour to make it less heavy yet authenic.

I feel cheesy even telling you! "Oh well, I'll get over it"

Tumour Shrinking

2010-02-02T11:05:00.000+02:00

I had great news yesterday ... It seems as though the tumour is shrinking! There is no visible malignancy and what is there is either odema (swelling / bruising) or low grade. I have been expecting (hoping) it. I think it has been due to, not only, the medical treatments but also the incredible faith, prayers and support during this time. A real team effort!

I can't pretend that I don't get moments of worry. I think back to the prognosis and it does scare me. I have spoken to quite a few people who have been through treatments and alot of them say they won't do it again. I think that it is quite hard to totally forget.

So life continues, the... mundain, exciting, sad, tired, gifts, pleasures, love, frustrations, rewards, difficulties, pain, tears and laughs. "There is nothing new under the sun" BUT it is all worth it. I am richer for it.

MRI Report

2010-01-27T20:44:00.003+02:00

This is not a pic of me looking like a chipmunk. It was taken in November. I just want to show off at how fast my hair is growing. I need to try find a latest one...

Well last week I had my MRI. It seemed to all be fine. There was a speck on the other side of my brain (right side) which I don't know what it is. I went to see Dr Dupper and he seems pretty content that things are alright. There doesn't seem to be any indication of high grade. There is still some odema and what might be some radiation damage ... we don't know. He is taking it to the "brainy" doctors on Friday when they get together to discuss it in more detail. Meanwhile, I continue as usual and have just about wiped it out of my mind.

Today I wasn't very happy. I had to make a dentist visit with dire results that is reflected by my chipmunk facial features. I have needed to go for a long time but was told that they wouldn't do any work while I am on chemo. So of course, the problem magnified itself to culminate in a wonderful series of events that has altered my ability to eat. I suppose a forced diet can't do much harm. Although I can still eat the yummy carrot cake to which I have placed a special area onto my hips. Anastasia and I went for our dentist visit on the same day and have ended up looking pretty much the same! Oh to share misery!

What a change of lifestyle I have had over the past years. I can only say that (par a few SMALL things) it is well worth it. I suggest it to everyone! Money isn't everything.

Day off

2010-01-18T20:51:00.000+02:00

Well this was my "official" day off in 5 weeks! Not that I had much rest though! I had a dental appointment, ran around dropping off and fetching kids, shopped and went to visit a friend (Hayley) Next week Anastasia & I are off to the densist and none of it looks like good news, I must admit.

Hayley had quite a bad fall while hiking. She has fractured her scull and has come out remarkable well. She is being a bit hard on herself wanting to get back into the swing of things , even though she has been given strict instructions to stay in bed in a dark room. I understand what she is going through. We are all happy that she has so few side effects considering the type of injury she has.

It really is quite hard for alot of us to just stop and breathe. We have to get over the guilt of not contributing or show that we are still capable. The house doesn't have to be perfect and the kids can sometimes just have sandwiches for supper. Its being there that is more important. It has taken me a while to stop feeling quilty. I do, however, still believe that we should still do what we feel will contribute to our life and those of others.

Its funny because working in the coffee shop, it is ok if I have nothing to do. I am actually allowed to just sit. Quite a different stance on life!

Get better soon Hayley! d:)

Back for scan

2010-01-14T21:03:00.000+02:00

Well next week I have to get "real" again! I am going to see Dr Dupper and have another MRI. It is not something I am looking forward to doing, I must admit. (Nothing personal against Dr Dupper!) I also need to visit the dentist. Something I dread.

Coffee shop life is definately not helping the waist! This week has been quiet, probably due to the schools opening. I think I am really going to enjoy my new life. Its quite hard to believe it is 2010 already!

I have known about this brain tumour for 3 1/2 years now! Well, I still just take each day as it comes and live my life to the fullest as I know how!

I will let you know... have a good weekend
d:)

Oh my word!

2010-01-05T20:50:00.000+02:00

To say I am shattered is a tad bit of an understatement. We are working our butts off (a good thing I am sure) in the coffee shop! What a year this has turned out to be! I am not sure (well I am sure) if we are making any money yet, but at least there is something coming in. (Still quite a bit leaking out) It always helps if there are people praying for it.

I feel like I have ended up in the middle of a riot somehow. James & I are too tired to think let alone perform any marital duties :) We just lay in bed and stare blankly onto the ceiling wondering what we have got ourselves into! (and deciding if brushing our teeth is at all worth the effort!)

Like I say - you never know where life will take you. I seem to only think about it after I have jumped in!

The end of another year

2009-12-26T11:30:00.001+02:00

It is hard to believe that this year is over! It is just as hard to believe where I am now after a year of treatment. I am going to have to face some realities next year. Another MRI in January, visit to the dentist (recommended after chemo) and a trip to the oncologist for a check up. To be honest, I don't really care about that. I believe firmly that I am alright.

On the 24th I got an aura that I would have a seizure. I felt my eyes twitching and lay down immediately. I can fight it (to an extent) if I catch it in time and change what I am doing that minute. I end up having the 2 hour nap (as usual) It is extremely frustrating!

Christmas was great and we had a wedding all in one week! (I love weddings) The kids loved their gifts. I have to admit it didn't feel like christmas as we were so busy. We moved into the house, even though it isn't finished properly. It feels so spacious! James & I are trying to recover! Plus the coffee shop is open today! What a life :)

So now I have a coffee shop

2009-12-18T10:12:00.003+02:00

We officially opened our doors on Tuesday the 15th. It was quite a scary time because it was hurry up and wait. What a new experience to have to sit and wait for customers! What a difference from the weekend. We had 70 people on Saturday for a childrens party and our un - official opening on Sunday with about 40 people coming. I never in my life thought I would be a waitress again! I have had such positive feed back, especially with regards to the venue. People have said it is "beautiful", "relaxing", "a great vibe", "a spoil!" (PS I will be updating my coffee shop blog with how it is to start a business and the news http://thegroveteacoffeeshop.blogspot.com/)

I have had my first booking on the 16th January for another childrens party. The kids have had a ball playing outside and our old "diggers" have caused competition between the boys.

Although I have been up early every morning and some times up till late, I haven't had a seizure - thank goodness. It is so much fun having some one cooking for me! Capturing all our products and meals took a while! This has really been a team effort with all of the family members! And we are still talking to each other!

I cannot believe where I am now - what a difference from having brain surgeries, chemo and radiation. It is still hard to comprehend. Yesterday (while waiting for customers) I looked around and wondered how it all happened. I have my family, business, children and my husband's office all with me.

What the last year has tought me is that our lives are short. I was given shocking news that made me think twice about what I wanted in my life. I made the decision to live it to the full. The reality is still hitting me! I am nothing but grateful for my blessings in life. I still need to paint again... I am just waiting for some space! The building continues!

Have a great break and I hope that you have time to think of next year and make your visions and dreams come to life. You never know what a year can hold!

Coffee Shop Progress

2009-12-05T09:13:00.002+02:00

Getting there! Our first function - Wednesday!

At the Train

2009-11-25T09:31:00.001+02:00