Posts Tagged ‘brain tumour research’

Almost forgot to post this despite saying I would, not long ago I was contacted by the Royal College of Art regarding brain injury Telerehabilitation project. Two students wanted to interview me regarding my brain tumour experience as they saw my short story, I was curious as my situation is a lot different from others and wasn’t sure what I could contribute.

I gave them my website as it has my full story but they wanted to interview me face to face.

It was arranged and two nice young ladies came for an informal interview that I hope helped them.

If you have been contacted, it might be worth giving them the time, I remember being a student and having to do something similar and it is hard if people won’t take part.

The interview is about your experience both physically and emotionally with a hope of designing or re-designing a service, this is not just about brain tumours but anything that can cause brain injury and how it affects you and your family.

If you haven’t been contacted and fancy taking part I am sure sure they won’t mind if it is not too late..

Vanessa email: vasiliki.karaoglou@network.rca.ac.uk

or

Ji Young Lee email: jiyoung.lee@network.rca.ac.uk

 

All best

Derran

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A recent experience has shown me that some patients don’t confide in their parents and parents don’t always talk to their siblings about the deeper things, feelings, emotions and fear.

While we all may be suffering from brain tumours, today is especially for mothers. If you are a mother with a brain tumour, you are still a mother not just a brain tumour patient with children. If you can celebrate, celebrate what you have while you have it. My thoughts go out to all mothers out there hoping you can have a nice day and something to look back on.

Best of luck to the future and happy mothers day.

 

Just a quick blog today, with winter in full effect for the past few days I hope everyone is ok and not badly affected by NHS issue’s, luckily I’ve not had to use emergency services but from what I’ve seen the NHS has been affected in many areas to the point of staff sleeping at the hospitals to ensure patients get the care they need.

I have to give them credit for what they do, personally I think they do a fantastic job even though there are issue’s.

While from time to time we complain about the NHS, just think that some countries charge for treatment.

All the best to everyone for BT awareness month.

As we all know cancer is such a cruel disease, has so many forms and brain tumours being one of the worse, as with my case it is not cancer but it can’t be completely removed so there is a chance it will grown again and become cancer. Patients have to go through horrifying treatments such as radiotherapy, chemotherapy and surgery. I’ve had surgery but don’t want to go through radiotherapy and chemotherapy and at present with a sane mind would more than likely want euthanasia to be legal in UK. That is a debate for another time as it is not to be taken lightly and I might change mind.

Everyone of us dreads the day we are told it is cancer and even more so that it is terminal, many with cancer choose to fight it until the bitter end and try to remain positive and others quite the opposite. While browsing through a brain tumour support group I found a post that was quite touching and asked permission to use it. This post shows that there is positivity despite what people go through.. (for now I will keep her name out unless she would like to me to add it)

“Today found out loosing my battle with my cancer (Oligodendroglioma). Brachytherapy didn’t work like they where hoping. I hope all of you when your battle against cancer. There isn’t anything left they can do for me. But I am praying you all win against this awful illness.”

After asking her for permission to use her post she also replied with..

“When you post just remember I don’t want anything. But if you can help other cancer patients I would be grateful. I am ready to pass on”

While this is a really horrible situation to be in, how amazing is her selflessness!!

So, if anyone reading this whether touched by it or not, please give to brain cancer research. There simply isn’t enough being done by the government. While the government has recently pledged to help…

https://www.gov.uk/government/news/brain-cancer-research-to-receive-45-million-funding

This will help but not enough and simply too late for many.

I send my best to her, her family and loved ones as well as anyone else going through this.

Thank you for taking the time to read,

Derran

The date 23rd July 2017 marks the 3rd anniversary of having surgery to remove a brain tumour. While an anniversary usually celebrates a happy occasion, this is  something worth celebrating as I have had no further growth.  For some it will be a fight for survival, surviving or in my case waiting on that time bomb to go off. For some odd reason it had affected me this year when usually thinking and talking about it normally doesn’t, at Christmas my scan results confused the neurology team and gave me a bit of a scare, it was sent to a team of experts who reviewed it and came to the conclusion that it had not changed. Keeping fingers crossed it will be better this year as next scan will be around December and results about Januray.

 

I wish all patients and families who are going through this journey all the best and hope you get some good news.

A link to a fellow blogger covering a lot of information like my blog…

Brain Tumour Warrior


 

There are a lot of sites out there that can give you info and help from forums to support charities, I never used any support charities but here are some links I did read through…

http://www.braintumoursupport.co.uk/


Everyone know MacMillan but here is their link in relation to astrocytomas…

http://www.macmillan.org.uk/information-and-support/brain-tumours/types-of-brain-tumour/astrocytomas.html


A good group to join is the facebook group “The brain tumour charity”, there are over 3,000 members all of which are supportive and in similar situations…

https://www.facebook.com/groups/114009085471466/

or the website…

http://www.thebraintumourcharity.org


Another good website to have a look at is..

http://www.braintumourresearch.org/


Another good support group I found is the astrofund who concentrate on the support for those with low grade Atrocytoma tumours…

Website : http://www.astrofund.org.uk/

Facebook Group : https://www.facebook.com/groups/240720846050761/


Other links can be useful such as Wikipedia, NHS, WEBMD and just google but be careful what you read as almost all sites tell you that you are going to die.