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Natalya from BT Buddies writes about our week long 'Behind the Mask' exhibition in Norwich

  • Sunday, 11 April 2010 22:28
  • Last Updated Monday, 16 August 2010 21:01

View of our exhibition space at The Forum, Norwich

Day 1 and 2 - BT Buddies 'Behind the Mask' and Treadmill-a-thon, Norwich, March 2010

I’m not sure ‘buzzing’ is the best way to describe how I am feeling at the end of our second day here in Norwich, but it’s the best one I can come up with right now!

http://photos-g.ak.fbcdn.net/hphotos-ak-snc3/hs461.snc3/25317_401332538022_69233973022_4990006_640546_n.jpgMonday went really well, we got things setup how I wanted them (well, after a while) and we had the opportunity to speak to a few people one to one , one of whom had actually had surgery for a brain tumour some years ago. Many people also stopped by and read each of the little stories that go along with the masks which is something I had hoped would happen...rather than them just glancing as they wandered by.

We also had a visit from a lady who works at Dunston Hall, she was delivering one of the prizes for the treadmill participants but she stayed quite sometime with us. Andrew and I walked her around the exhibition and we chatted about many different brain tumour related issues...another lovely encounter!

But today, Tuesday, has been better than I ever expected.

http://farm3.static.flickr.com/2711/4484680233_788edd6ce3.jpgI am writing this having just watched a group of 5 ‘hoodies’ laughing and joking as they approached the masks (obviously having no idea what the exhibition was about) then when I wandered over one asked what the masks were for...a rowdy group quietened and actually listened to my brief explanation of what the masks are used for...then, they looked at Michael Johnson’s mask (see image, right) and one of the teenagers was quite moved, not only by Michael’s story, but by all the amazing words attached to his mask...”wow, I don’t know how I would feel if I ever went through something like this but this guy (Michael) is so positive”... I think we can call that a job well done!

Earlier a lady with a young daughter was moved to tears by one of the stories she read and spent quite sometime chatting with me about various aspects of having a brain tumour, and about how we all go through life oblivious to so much yet when faced with an exhibition like ours that confronts one of those things hardly ever spoken about we suddenly realise just how lucky we are.

http://photos-f.ak.fbcdn.net/hphotos-ak-snc3/hs441.snc3/25317_401644423022_69233973022_4997161_5938662_n.jpgToday has also seen many little conversations, lots of people have picked up our leaflets and booklets, we’ve had walkers on the treadmill and I think both Andrew and I feel the days seem to be getting better and better.

On Thursday the Sheriff of Norwich, Professor Tim O’Riordan and Chloe Smith MP for Norwich North will be visiting the exhibition and on Friday Charles Clarke MP for Norwich South will also be here to talk with us and view the masks...as you can imagine we are thrilled with the support we are receiving from all these people and the Norwich community.

I’d also like to thank each and every one of the mask participants for not only putting their all into the decorating of their masks but for sharing their stories and inspiring people I never dreamed would be interested in our display and the cause.

I will try to update things again later in the week but bear with me, things are crazy busy and when I get home all I want to do is sleep!

 

View of our exhbition space at The Forum, Norwich

 

Day 3 - BT Buddies 'Behind the Mask' and Treadmill-a-thon, Norwich, March 2010


Michael Johnson's story and mask

I arrived at the exhibition around 8.45am today and was surprised to see quite a few people looking at our exhibition.

As I placed my things under the desk I was approached by 2 ladies who were waiting for the library to open and the masks had caught their eye. They were particularly taken by Michael Johnson's mask and used the words 'truely inspiring', they also said that they had found the whole exhibition beautiful and very moving. This is what I had hoped our exhibition would do, help to show people what dealing with a brain tumour is like and giving them something positive to take away from their time spent reading the inspirational stories.

The day's encounters didn't stop there. A few minutes later a lady with a young child in a pushchair slowly walked around each of the masks before stopping at our main information table. Andrew and I had begun to get a feel from most people as to whether they wanted to chat or not and for some reason I felt I should go over and say hello to this lady.

Within a few minutes I had found out that her mother was in the last stages of dealing with a Glioblastoma Multiforme. The family were finding it difficult to understand what was happening too her and felt they had no support at all. I gave the lady some information which she was very grateful for and my offer to talk or email any time made her teary eyed. She said she was just pleased that for the first time since her mothers diagnosis she was able to talk to someone who understood.

A little later in the day Trudy Thomas, former Brain Tumour UK community fundraiser wandered by and had to double back when she realised it was a brain tumour exhibition! Praise from others in the 'business' (well, she used to be!), is great to hear and Trudy was very impressed with the exhibition.

We also had a visit from a radiographer from the Norfolk and Norwich who had heard about the exhibition from one of the oncologist and wanted to take a look. He spent quite some time look at everything and we then had a long chat about the exhibition, how it would help other radiographers to see something like this and possibly give patients a different way to look at their own masks as they are going through treatment. He also discussed using some of our images in the radiotherapy waiting room and the possibility of delivering a lecture around our exhibit to others at the hospital. Both Andrew and I found his visit extremely positive and we were very glad that he took time to visit and speak with us.

Our final visitor for the day was Michelle, secretary to Dr Ajithkumar, who had had an email and phone call from the radiographer who visited us earlier and wanted to come and take a look at the masks herself. Andrew and I watched her walk from each mask reading every story and I was about to get up to introduce myself when she came over to us. We spent quite some time chatting about many different aspects of dealing with a brain tumour and the philosophy that Dr Ajithkumar has when dealing with the brain tumour patients that he sees.

Although today's 'traffic' felt a lot slower than the previous couple of days there were still plenty of people looking at all the masks and reading all the stories. Our experiences with the visitors from the hospital were also very encouraging, I think I had underestimated just what an impact this exhibition would have and the wide range of people it would reach out too.

The end of day 3 and I was feeling very positive about the work we were doing, but I was getting very tired. After packing up for the night Andrew and I knew the next 2 days were going to be busy and quite important for the future BT Buddies.

Day 4 - BT Buddies 'Behind the Mask' and Treadmill-a-thon, Norwich, March 2010

Coffee to start the day!

Today, again, brought its fair share of visitors affected in some way by a brain tumour. One gentleman, who was currently receiving radiotherapy at the Norfolk and Norwich for a Glioblastoma Multiforme had been told about us by one of the radiographers and wanted to pop along to see what others had done with their masks. He stopped to chat for a little while and may even take his mask home when he finishes treatment and decorate it!

Another gentleman wandered over a little while later and asked if we had any information on coping with the side effects of brain surgery and a tumour. His wife had surgery 7 years ago and was left with partial paralysis but to date she had just been trying to cope herself and wasn't aware of any services such as neuro rehabilitation which may be of some use to her. It felt good to be able to give out information on local support services as well as national ones and I hope that this lady finds the support she needs now.

Just like the few days before, today saw a steady stream of people stopping to look at the masks and reading the stories. A lot of people have taken booklets and leaflets and asked questions about the masks and brain tumours in general. We also had a few walkers on the treadmill too which was nice.

One of those who took a moment to pose on the treadmill was Norwich Town Crier, David Bullock (see image left). Andrew got talking to David outside the Forum and he kindly agreed to come in and see what we were up to. Amazingly his wife had had a brain tumour many years earlier and was now in her late 70's! A thoroughly nice chap, David actually popped back the next day to see us and how we were doing.

Media coverage of our event was one of the things that we were a little disappointed about during the week but the Norwich Evening News did send a photographer out today who spent quite some time photographing all our masks for a short piece which was featured in the paper on the Saturday (after the exhibition!). For those who have masks in our display, I made sure I got a copy of the paper for each of you and will continue to keep copies of any future press articles etc and send them all once we have finished the exhibition in November (if not before).

Not long after the photographer had left Chloe Smith, MP for Norwich North, made it for a quick tour of the exhibition and to pose with our treadmill! I was very pleased with the interest she took in the masks and the explanation I gave of how they are made and used. It is always interesting to show the mask to someone and then a photo of how it is used, the reactions vary, in Chloe's case she was immediately sympathetic towards those experiencing the whole mask making and radiotherapy process.

Chloe Smith MP for Norwich South

Natalya explains to Chloe Smith, MP for Norwich North, how the mask is held in place during each radiotherapy session

Unfortunately Chloe was running a little late so could only pose along side the treadmill, but, we would like to say thank you to her for taking the time to come and meet with us and find out a little more about brain tumours.

The rest of the afternoon flew by again but we made a joint decision to finish an hour early as I was really struggling and hope an extra hours rest might help me make it through tomorrow without feeling too bad.

 

Day 5 - BT Buddies 'Behind the Mask' and Treadmill-a-thon, Norwich, March 2010

One of the first things that comes to mind when I look back on today's visitors is the lady whose husband had been diagnosed with a grade 4 brain tumour in 2005. After he was diagnosed she had asked if there was a support group nearby that they could attend - they were told no, there was nothing. They also asked if there was anyone else in a similar situation to them that they might be able to speak to - again they were told no. The lady felt she was completely on her own and this was how their journey was right to the time when her husband sadly passed away. She wanted us to know that she was so glad that there was now somewhere people could go to receive the kind of support she needed and hoped BT Buddies continued to go from strength to strength.

We had another visitor from the Norfolk and Norwich hospital today too. A radiographer (see image on right) who had written a paper on whether the clear perspex or thermoplastic mask was better for delivering the most accurate radiotherapy. The lady spent a long time viewing each of the masks and taking photos before coming over to chat to us about how great and informative the exhibition was. We hope to be able to find out more about the ladies research in the next few weeks and will let you all know when we do.

Then, right on time, Sheriff of Norwich, Professor Tim O'Riordan arrived to talk to us about our work and to view the exhibition. I missed his arrival so walked him halfway through Andrew and Tim chatting. I turns out Tim had had a secretary whose husband passed away from a brain tumour so he was really keen to look at the masks, read the stories and find out a bit more about brain tumours and BT Buddies.


Andrew showing Sheriff of Norwich Professor Tim O'Riordan around our exhibition

 

Sheriff of Norwich Professor Tim O'Riordan on our treadmill alongside BT Buddies Founder Natalya

 

2.30pm, and bang on time too, Charles Clarke, MP for Norwich South, wandered into the Forum and over to our exhibition. I'm not a politics person but when you see the odd snippet on the news or in the papers you kind of form an opinion of a person without ever actually knowing them at all! Whatever our opinion of Charles Clarke had been, both Andrew and I were blown away with how down to earth, and interested in the cause, he was.


Charles Clarke, MP for Norwich South, taking things in his stride


Charles spent some time talking to us about the masks, brain tumour statistics, how the world of politics works when it comes to things like Early Day Motions and our events for International Brain Tumour Awareness Week in November this year.

He also didn't even hesitate when Andrew asked if he would walk a mile for us on the treadmill! The jacket was off and he started his very brisk walk interrupted every now and then by constituents wishing to chat to him about the up coming election and police officers talking about how far they walk in a day!

Before he left Charles offered his full support to BT Buddies for the future and will be taking part in one of our walking events in June 2010!

Charles Clarke, MP for Norwich South talks to police officers whilst walking a brisk mile for brain tumours

The rest of the day passed very quickly with a few more walkers and visitors, and when 6pm came I even felt a little sad that the week was over!

As we packed up the exhibition I also felt very proud of all the people that had made this possible.

To each and everyone of you who decorated a mask, or helped to, thank you. You are raising awareness of brain tumours and will continue to do so for many months to come!

And to all those who stopped to find out a bit about our exhibition and brain tumours throughout the week or walked on our treadmill, we appreciate it more than you know.

Now bring on events in Liverpool!

Your BT Buddy

Natalya Jagger

BT Buddies Founder

You can view a slideshow of all the images from our event in Norwich below...

All images © 2008 - 2009 Copyright btbuddies.org.uk