Talj’s Blog

There just aren’t enough hours in the day any more so sadly my blog has had to be put to one side I am going to try my best to post here once a month just to try and keep you all up to date and if I fail you have my permission to shout at me

So, why is life so busy? As many of you know I launched the UK’s only information website for high grade brain tumour patients, their families, friends and caregivers at the start of March and things have been going from strength to strength. BT Buddies is receiving around 2,500 new visits a month and was awarded Cancerbackup’s website of the month in April.

For the last month I have taken on the task of putting together a website for anyone affected by a low grade brain tumour with a wonderful and extremely well respected lady within the world wide brain tumour community. The site will be launched on Monday 1st June and we hope it will help those seeking information on any type of low grade brain tumour.

Following the launch we will then be both working on a Paediatric Brain Tumour information website which we hope will be ready by the end of 2009. That will then see us producing the highest quality information for anyone affected by a brain tumour in the UK.

Add to all of this the request from the Association of Neuro-Oncology Nurses for me to produce a website for them and I am sure you guys get an idea of whats keeping me from blogging these days!!

So, that takes us to 4 sites so far, I think? But there are two more…

We will also have 2 fundraising websites! The one you all know about is RoseBuddies and though things have been quiet lately we have been busy at work behind the scenes.

On November 1st 2009 our ‘Book of Hope’ will go on sale. The book includes images from photographers around the world and quotes from them on their idea of hope. All proceeds from the sale of the books will go to providing Patient Resource Handbooks for newly diagnosed brain tumour patients and Treatment Records so that patients, their families or carers can keep a record of anything from blood test results to questions for doctors appointments.

Another very special fundraising project that we have been waiting a longtime for is finally coming together. We hope that in time for Christmas we will have on sale some of the jewellery Rose designed before she passed away.

Towards the end of 2009 we hope that we will become a registered charity ourselves and we will then publish a mission statement to make clear how the funds we raise will be used to help those affected by a brain tumour in the UK.

As well as all these things we have many events planned for International Brain Tumour Awareness Week from 1st to 7th November…I’ll try and update you on those nearer the time!

I think that’s pretty much all as far as the charity and information ‘work’ goes!

At the start of May MBF and I went to see the bluebells near where I live, it was a lovely day and they really did look beautiful…

After our day in the bluebell woods we also had chance to go and take some photos of my sister. She is 8 months pregnant with her first child…and my first nephew

She had wanted some photos of her ‘bump’ but didn’t want her face in them! So, this was taken whilst she was sitting down ‘resting’ between shoots…she’ll kill me when she finds out I took a sneaky one with her face in!

Not long to go now till she gives birth and I think the whole family is very excited!

My younger brother will be leaving at the start of August to go to university in the US and whilst we are all very proud of him I know we will miss him like crazy. Hopefully the baby will be a little distraction until my brother returns for Christmas

I had my latest appointment with the Lupus consultant this week and have added another autoimmune disease to my list. Secondary Raynaud’s Syndrome – http://www.medic8.com/healthguide/articles/raynauds.html. But I am plodding along and hoping all the positives happening for me right now pull me through the crappy times

Right, I think that is definitely all my news! Off to watch the Britains Got Talent final results now…