Georgie: Two Years On

Greetings from Cyprus!

My birthday is now hugely bittersweet because it also marks the day Georgie died. Tomorrow will be two years since his death and I struggle massively with the fact that I get another year older on the day he stopped living. Everyone does their best to make the day nice but I was very close to Georgie and I can't help but think of him, as I do everyday. 

I loved Georgie very much. I still talk about him lots and I think about him all the time. He is still very much a part of my everyday life with this blog and my voluntary work but there is definately a hole in my world without him. I don't think that will ever change, he is simply irreplaceable. It's hard to find the right words so I will keep this blog post nice and short. I just wanted to publicly acknowledge what will be a very bittersweet day for me.

Love you Georgie. Missing you more and more everyday xxx

Bowel Cancer Awareness Month

So April is upon us already. Time is passing by like crazy at the moment. I apologise for the lack of blog posts recently, time seems to escape from me! April is a crazy month for me but I have built up a backlog of posts to ensure I post more this month!

April is also Bowel Cancer Awareness Month in the UK. Bowel cancer runs in my family and my paternal aunt, Eleni and paternal uncle/Godfather, Sotiris both passed away after suffering from colon cancer, which is a variation of cancer of the bowel. In a few years time I will be old enough to follow in my dad’s footsteps and have regular colonoscopies to ensure I catch anything early.

This post is dedicated to my aunt and uncle as well as my dad who has had to find a way to live without his big brother and little sister. I am going to try and raise some awareness of cancer of the bowel and some charities you should keep an eye out for this month.

What is the Bowel?
The bowel is divided into the small bowel (small intestine) and the large bowel (colon and rectum). It is part of our digestive system:
* Food passes from the stomach to the small bowel.
* The small bowel takes nutrients  into our body 
* Any undigested food passes through the large bowel
* Water is then removed from the waste matter
* The waste matter is then held in the rectum (back passage) until it leaves the body as bowel motions (stools or faeces)


What is Bowel Cancer?
* Cancer occurs when the cells in your bowel multiply out of control. 
* These cells can invade surrounding tissue and spread to other parts of the body.
* Nearly all bowel cancers develop in the large bowel. Two thirds are in the colon and one third in the rectum.
* Bowel cancer is also referred to as colorectal, colon or rectal cancer.
* Cancer of the small bowel is rare - just over 700 people a year are diagnosed in the UK.


Bowel Cancer and Gender:
* Nearly 40,000 men and women are diagnosed with bowel cancer in the UK every year.
* Bowel cancer is the UK's second biggest cancer killer
* More then 16,250 people dies each year from it (this equals one person every thirty minutes)
* Bowel cancer is highly treatable if diagnosed in the early stages.


Bowel Cancer Symptoms:
You may experience one, some or all of these symptoms or none at all. It is important to know your body and your bowel habits and visit your GP as soon as you feel something is up. Early diagnosis is key to having the best shot at survival.
* Bleeding from your bottom and/or blood in your poo
* A change in bowel habit that lasts longer then three weeks (especially looser or runny poo)
* Unexplained weight loss
* Extreme tiredness for no obvious reason
* A pain or lump in your tummy


How is Bowel Cancer Diagnosed?
* The process begins with you seeing your GP and discussing your symptoms. You will be asked about your bowel habits and pattern. It is hugely important to describe what is normal and abnormal for you. Also, remember to mention any significant family history. Do not be embarrassed; your doctor is a medical professional who has seen and heard it all. Discussing your poo may be awkward but it could also save your life.
* Depending on your symptoms, your doctor may want to feel your abdomen and examine your back passage with a digital rectal examination. This entails your doctor placing a gloved finger into your back passage and feeling for any lumps or swelling. This can be uncomfortable but not painful.
* You may be asked to give a stool (poo) sample so it can be tested for blood. This is because polyps (small growths within the bowel) could turn cancerous and tumours often bleed.
*You may also need a blood test to check for anaemia
* If your doctor believes your symptoms are being caused by cancer, they will refer your to a hospital specialist. You should be seen within two weeks and sent for further tests. These tests could be a colonoscopy (examination of your rectum and colon) or a flexible sigmoidoscopy (examination of the rectum and lower part of the colon)


Is a Colonoscopy Painful?
* You will made comfortable on a couch or bed and a nurse will stay with you throughout the test.
* You may also be given light sedation which will help you relax
* The doctor or nurse will gently pass a long flexible tube, that has a light and camera on the end, into your back passage and then into your bowel.
* Air will be passed through the tube to distend the bowel and give a clearer view of the lining. This may give you wind like pains but they won't last long.
* After the test you will be left to rest for around thirty minutes. You may feel a little bloated but this will settle quickly.
* You will need someone to come and collect you, especially if you were sedated.


What Does Treatment for Bowel Cancer Involve?
* The treatments for colon and rectal cancer are different. There will be many options to consider. Your specialist nurse or consultant will discuss them with you.
* Cancer in the Colon: The most common form of treatment is surgery. This could be open or keyhole. If surgery isn't available you may be offered chemo first but this is rare. Chemo can be recommended after surgery, unless the cancer was caught in the very early stages.
* Cancer in the Rectum: Usually treatment will involve a short course of radiotherapy and chemotherapy (known as chemoradiation) then surgery and then possible more chemo.


Minimising your Bowel Cancer Risk:
The exact cause of bowel cancer is unknown. However there are certain factors that can increase your risk:
* Consider your diet (read my healthy eating post!)
* Keep active with regular exercise
* Keep hydrated and limit your alcohol intake
* Avoid smoking
* Take part in bowel cancer screening programmes if and when invited

Bowel Cancer UK (www.bowelcanceruk.org.uk)
* Bowel Cancer UK aim to save lives by raising awareness or bowel cancer, campaigning for the best treatments and care, and providing practical support and advice.
* If people have any questions about bowel cancer; whether they or a loved one have been diagnosed, we are here to help. Nurses are available from Monday to Friday, 10am -4pm. You can contact them on 0800 840 3540 or on support@bowelcanceruk.org.uk
* We work closely with the NHS and Department of Health. Most recently we liaised with the Department of Health to produce a resource pack for GP's as part of the "Be Clear on Cancer" campaign.
* We also proactively campaign to ensure that irrespective of where they live in the UK, patients have access to the very best treatment and care.

Beating Bowel Cancer (www.beatingbowelcancer.org)

Beating Bowel Cancer formed in 1999 (incidentally the same year my auntie Eleni passed away from bowel cancer) and has been working hard to raise awareness of the second biggest cancer killer in the UK as well as promote early diagnosis and help as many people as possible have access to the best treatments. Beating Bowel Cancer has a very clear vision – “A World Where Bowel Cancer Is Beaten” and their mission is also very clear – “Beating Bowel Cancer Together”. The charity sticks to four key values:  being supportive, being inspiring, being trustworthy and being dedicated. The charity works with individuals, communities, medical professionals and the government to improve early diagnosis rates, to improve public awareness of this cancer type.

Please do keep an eye out for the symptoms of bowel cancer. They can be seen as embarrassing but I assure you, your GP will have seen and heard far worse. Get yourself checked out should you be worried about anything you have read in this post today and check out the chartities above as they will be working very hard to raise awareness of bowel cancer.

xxx

Blog Post 200: International Rare Disease Day 2013

Today is International Rare Disease day. I am going to use this day to raise more awareness for  rare conditions that have affected people I know and care about. Some of this information will have been covered in this blog before but it’s always good to go over things and refresh memories as well as raising awareness for newer followers of this blog!

On a personal note, this is my 200th post on this blog!!! Thank you so much to everyone who reads it and to everyone that provides me with encouragement, support and great post ideas. I would also like to use this post to publicly thank David Collins for his unwavering support and guidance. David is a very humble man but he is someone I admire greatly and look up to. Thank you David x

George Pantziarka and Li Fraumeni Syndrome

Of course I have to mention my beautiful Georgie. He was a Li Fraumeni sufferer and I want to raise awareness of this condition in the hope that it saves others from a similar fate.

The TP53 Gene:

The TP53 gene acts as a tumour suppressor. It creates the p53 protein which kills cancerous cells. When the TP53 gene fails, the body loses one of its key ways of stopping damaged cells developing into cancer. Some people with cancer find their TP53 gene is damaged within the tumours but is functioning normally throughout the rest of their body. However, some people are born with a damaged TP53 gene. This is usually an inherited problem and it passed down from parent to child. These people have a very very very high risk of developing cancer.

Li Fraumeni Syndrome:

LFS is one of the most serious kinds of inherited TP53 disorders. It is a rare disorder that greatly increases the sufferers risk of developing several kinds of cancer especially children and young adults. The most common cancers associated with LFS are: breast cancer, osteosarcoma (a type of bone cancer) and soft tissue sarcomas.

Diagnosing Li Fraumeni Syndome:

LFS is rare so not much is known about it. Genetic testing and genetic counselling are used to confirm whether or not someone is suffering from LFS. If it is confirmed then this person will need to be regularly screened to check for cancer. The sad fact is, people with LFS are very likely to develop cancer so it is hugely important for them to be screened as cancer is easier to treat the earlier it is diagnosed.

Please look into genetic testing if you meet the following criteria:

An individual with:

·         Adrenocortical cancer at any age

·         Choroid plexus cancer at any age

·         Rhabdomyosarcoma below 5 years

·         Breast cancer below 30 years old (if eligible for BRCA1/2 testing, this should be performed first)

·         Two or more primary cancers of the following: sarcoma, breast, brain, adrenocortical or any childhood cancer; at least one below 46 years old

Two relatives affected with:

·         Sarcoma, breast, brain, adrenocortical or any childhood cancer; one relative below 36 yrs and one relative below 46 years old

Three relatives affected with:

·         Sarcoma below 45 years old and

·         any cancer below 45 years old and

·         any cancer below 45 years old or sarcoma at any age

Georgie and Li Fraumeni Syndrome:

Georgie’s mum died when Georgie was one years old. She was 29 years old and had ovarian cancer. Georgie was then diagnosed with cancer a few months later on his second birthday. At the time it was written off as a horrific coincidence by doctors. It wasn’t until Georgie was diagnosed with cancer for the third time at the age of fifteen that we discovered he had Li Fraumeni Syndrome which had probably been inherited from his mother.

It took a very long time for Georgie to be diagnosed with the osteosarcoma that eventually killed him. At first he was told it was a dental problem. Had we have known he had LFS; he could have been diagnosed much quicker as alarm bells would have been ringing. We will never know if this could have saved his life. We live with the “what if?”

LFS and other TP53 disorders are rare and not much is known about them. There is little awareness about them amongst the general public and even the medical profession. There aren’t any dedicated support groups or charities, no information resources and no registry of the sufferers. There isn’t a community for the sufferers which can make it very isolating, lonely and terrifying for the sufferers and their families.

As I have mentioned before, my uncle has set up the George Pantziarka TP53 Trust to honour Georgie’s memory by providing support to families and individuals, to provide information on TP53 disorders including LFS and to get research funded to look into the condition.The forum on the website which is used to bring together people affected by the condition. Please do take a look and feel free to ask any questions – my uncle is always happy to answer!

For more information on TP53 and Li Fraumeni Syndrome, please visit www.tp53.co.uk

Dawn Green and Pesudomyxoma Peritonei

I have mentioned my beautiful fellow CRUK Ambassador and friend Dawn Green on this blog before. She is literally Wonderwoman and I am in awe of her.

In 2008 Dawn was diagnosed with Pseudomyxoma Peritonei. 

Pseudomyxoma Peritonei is a very rare type of cancer that usually begins in your appendix as a small growth, called a polyp. Or, more rarely, it can start in other parts of the bowel, the ovary or bladder. This polyp eventually spreads through the wall of your appendix and spreads cancerous cells to the lining of the abdominal cavity (the peritoneum). These cancerous cells produce mucus, which collects in the abdomen as a jelly like fluid called mucin.

Dawn was given just three months to live and the cancer was so rare that her doctors didn’t know much about it at all. Whilst fighting the disease Dawn noticed a distinct lack of emotional support for people fighting this form of cancer. 

Dawn decided to set up a charity to help others in her situation. Pseudomyxoma Survivor aims to provide emotional support for anyone dealing with this type of cancer and to prevent anyone feeling alone or isolated during their fight against the disease.

The charity fundraises and raises the profile of PMP whilst also funding research into the disease. Dawn is an incredible patient advocate for all survivors, and this results in increased awareness and higher survival rates worldwide.

If you would like to know more about this type of Cancer or Dawn’s charity then please check out her website, I will post the link below. If you are interested in getting involved then I’m sure she’d be happy to hear from you!

A cancer diagnosis is terrifying, especially when it’s a very rare cancer such as this one. More needs to be done to understand these rarer types of the disease so cure’s can be found and people can be saved. Dawn recently found out that her cancer has returned but thankfully it is slow growing. I wish her so much luck and I am sending so many positive thoughts and lots of love her way. I think Dawn is incredible and the World needs people like her. She is a tough cookie and she won’t let cancer beat her. We’re all with you every step of the way beautiful Dawn.

http://www.pseudomyxomasurvivor.co.uk/

xxx

My Beautiful Cousin Georgie xx

Happy Birthday Auntie Eleni

I was speaking to my dad earlier and he pointed out that today should be my auntie Eleni's 44th birthday. 

She died at a very young age so it's hard for me to imagine her as a forty something. I like to think she'd be happily married and she would have some children who would have been my cousins and friends. She was a hairdresser so I like to picture her with her own salon.

I have my aunts old bus pass at home and it still has her last travelcard inside dated 1998. In front of that is a photo of myself, my sister Nikki and my cousin Alex. It makes me cry everytime I open it because it just shows what an incredible aunt she was. 

The saying goes that only an auntie can love you like a mother, keep secrets like a sister and share love like a friend. This is true. My auntie Eleni was devoted to get nieces and nephews. 

As always I find myself wishing I could spend the day with my dad, a man who has to bear the loss of his little sister every day. 

I am lucky enough to have inherited my aunt's curly hair and I have exactly the same laugh as her so she is always a part of me.

Miss you everyday Aunty Eleni,  Happy Birthday xxx

A Poem For Those Facing Christmas Without Loved Ones

I found this poem by Linda Winchell and I think it pretty much sums up what I would like to say to those I have lost and won't be seeing this Christmas. Sending lots of love to anyone facing Christmas without a loved one.

For Georgie, Auntie Eleni, Dada Sotiris, Nouna Gina, Yiayia Alexandra and Buppou Peter. I miss them all more and more every day xxx

I can't send you roses

I've tried that once before.

I can't see your smilling face

that use to greet me at the door.

I can't call you on the phone

to wish you, Merry Christmas, and, Happy New Years too

I can't even mail you a card

I have, tried that too. 

I can't hear the sound of your sweet voice 

Or the children's laughter, hear.

While I can't understand it all

You seem to get, neglected every year.

But I can say that, 'I love you.'

For you are still, to me so dear.

But I wanted to wish you Merry Christmas

and wish that you were, still here.

Dear one, I can't seem to understand why

this cross that I must bear.

And I pray that God has blessed you

'Merry Christmas, ' and may God keep you in His loving care

xxx

Raising Awareness of Bowel Cancer

As mentioned in the post below, today marks 13 years since my aunt passed away. She was yet to reach her thirtieth birthday when she died. She died after being diagnosed with bowel cancer (colon cancer to be precise). My uncle/Godfather also passed away in his very early thirties after battling the same type of cancer.

I get it; talking about your bowels and your poop can be embarrassing. It can also save your life. My aunt was diagnosed too late and she died pretty soon after diagnosis. We live with a constant what if: “if she had been diagnosed sooner, would she still be here today?”

My dad lost a brother and a sister to bowel cancer. As an adult fully aware of what has happened to our family, I can now fully appreciate why my dad forced me to each Bran Flakes for breakfast as a child (I do eat it now as well for anyone wondering!). Taking care of your bowels and being aware of what is “normal” for you is hugely important, especially for a family like mine. I hope my dad won't mind me saying this publicly, but he had regular colonoscopies to check himself and to make sure he is OK  When I am a little older, I will be doing the same. They may be unpleasant but they are a hell of a lot better then a battle with cancer. With a family history like ours, you really can't be too careful.

Bowel cancer can hit you at any age; my aunt and uncle are testament to that. I cannot stress enough the importance of being aware and going to the doctor if you feel something is not right. Your doctor will have seen and heard it all before and much worse besides. They will treat you with care and in the strictest confidence so I urge you to go to the doctor if you feel something isn't right. It could very well save your life.

I know some people struggle to understand why I spend so much time and energy writing this blog and all the other cancer related work I do. Days like today should make people understand why this is all so important to me. I have six mimossimou’s a year (Death anniversaries in Greek).  That pain and grief is difficult to portray in words but it is very real. If I can save ONE life with this work and this blog then it is all worth it.

Please do read about bowel cancer and some of the charities around to help people prevent the disease as well as support people with the disease. Please do read about the symptoms and read about how you could potentially prevent yourself from developing this horrific type of cancer.

Life is the most precious commodity we possess and we should respect it and look after ourselves to try and preserve our lives as best we can. Check your bowels, get to know what is normal and please do seek medical advice should you feel something is not right.

Beating Bowel Cancer - http://pennysophia.blogspot.co.uk/2012/11/charity-showcase-beating-bowel-cancer.html

Bowel Cancer and Bowel Cancer UK – http://pennysophia.blogspot.co.uk/2012/02/bowel-cancer-uk.html

xxx

Aunty Eleni - Thirteen Years On

Hi all,

Hope you are well.

Sorry for the lack of blog posts recently, I am in the middle of moving homes AND work is a little crazy at the moment! I’m busy researching away though!

I just wanted to do a post as tomorrow will mark thirteen years since my beautiful Auntie Eleni passed away. Eleni means Helen in Greek.

I have lost two aunts and an uncle to cancer but Eleni is the only one I can remember clearly as I was ten when she died as opposed to a baby when the others passed away.

My parents divorced when I was fairly young and my dad would have myself and my sister Nikki at the weekends. He would always take us out to the cinema, to museums etc…. and my auntie Eleni would sometimes come with us. She was very protective of us and would always make Dad give in to our demands, I remember queuing up for ages to get to The Tower of London and as soon as we stepped inside, we began to demand McDonalds. My dad refused as we had only just got there but Auntie Eleni stepped in and to McDonalds we went!

I have taken after my aunt in many ways. I remember I was my yiayia once (my mum’s mum) and she said something funny. I laughed my head off and she stared at me with a really weird look on her face. I asked her what was wrong and she said I had the EXACT same laugh at my Auntie Eleni and she was stunned by it. My mum has also commented on this so I tend to think of my aunt when I have a real laughing fit. I also inherited her crazy curly hair, although hers always looked much nicer then mine ever does. I’m also the proud owner of a lot of her old possessions which are safely locked away.

Auntie Eleni’s death is the first one I clearly remember. I was in year six at primary school at the time. My mum let us have the day off school and took us to the newly opened Bluewater to buy something to make us feel a bit better. It was a very painful and difficult time and I still really miss my aunt to this day.

My sister Eleni is named after our aunt and was born after her death so she wasn’t able to meet the lady she is named after. She is told all about her and I know our aunt would have adored her just as much as she did the rest of us.

My dad, my stepmum, my brother and sister live in Cyprus now and I miss them all the time. Its days like tomorrow that make me wish my dad was still in this country as I would like to be able to spend the day with him. I know he likes to talk about his sister and the other family he has lost and it’s hard to do that over the phone as I just want to be able to hug him!!

I was the first grandchild on the Christofi side of my family and I was the apple of my aunt’s eye (we all were). She would always tell me that I was a clever girl and would change the world someday. I hope I’m making that come true with the work I do.

RIP Auntie Eleni, miss you more everyday xxxxx

Nouna Gina - 18 Years On

Another memorial is upon myself and my family.Tomorrow will be eighteen years since my Nouna (Godmother in Greek) Gina passed away. Eighteen years.

Nouna was mum to my cousins Despina and Georgie. She was also wife to my Dada (Godfather in Greek) Pan.

I was five years old when she died so my memories of her are pretty hazy. I remember she called us all cheeky monkeys a lot and I have lots of photos that show her bathing me etc…. so I know she was a great godmother and aunt.

Nouna Gina died very suddenly, without much warning. One minute she was there, the next she was gone. Despina was nine at time and Georgie a little older then one. I think her death will always be one of the most tragic events of my life. A very very sad waste of a young life.

Myself and my sister Nikki were raised very closely with Despina and Georgie. Later their brother Louis and our sisters Zoe and Sophia joined us and we all retained the closeness. They are all extra brothers and sisters to me and they always will be.

Despina is an amazing young woman. To have been dealt such cruel blows in life is horrific but she continues to show strength and dignity in her grief. She recently got engaged to her partner Tom; a very very happy event that caused much ecstatic screaming from myself and our Yiayia when we found out. She deserves her happiness and I sincerely hope that wherever they are, her mum and her brother can see her and join in with her joy. Despina and I can annoy each other and we rarely see each other at the moment (she’s in Surrey and I’m in Essex) but the bond we shared through childhood to the present day will always remain strong and she is one of the first people I run to when I am upset or happy.

Days like this one highlight why it is so important to do the volunteer work that I do. It’s not only a tribute to the six relatives I have had to say goodbye to. It’s also a way of me helping to prevent having to go through it again with another relative. As a family we have been blighted by cancer enough and I can’t bear the idea of going through it all again. I also want to protect my family who have been through so much already.

As for my Nouna, I sincerely hope she has been reunited with Georgie somehow and they are getting to know each other after so many years apart. I also hope she can see what an incredible young woman her daughter is.

RIP Nouna xxxx

Georgie's 19th Birthday

Tomorrow is Georgie’s 19^th Birthday. Instead of spending the day celebrating the fact that my wonderful cousin is approaching the end of his teens, our family will be spending the day without him.

Everyday is hard without Georgie but days like tomorrow just highlight the massive hole he has left in our lives.

It’s no secret that I loved my cousin very much. I still do. I miss him all the time. This blog and the work I do with Cancer Research UK have enabled me to keep him close to my everyday life. I still talk about him all the time and I still think about him all the time.

I’m not sure about what happens when we die. I like to think Georgie is sitting somewhere with his mum, munching on a huge plate of chicken drumsticks and all the other food he loved. I very much hope he can see us all. I hope he is at peace and free from pain.

I am eternally proud to have had such an amazing cousin. He was intelligent, kind, loving, funny and so much fun to be around. He was also incredibly brave. My heart swells with pride whenever I see his friends continue to write notes on his Facebook page. I’m always told such wonderful things about him. He is very much missed by all that knew him. He made a huge impact on people’s lives, which is incredible  for a seventeen year old. He made his mark on the world and he continues to do so with the amazing work his dad does in his memory. Georgie also lives on in the work I do which is all dedicated to him and the amazing impact he had on my life. He is my inspiration. I can only hope to be half as incredible as he was.

Happy Birthday Georgie. Forever seventeen.

Love you xxxxxxx

My Volunteers Week Speech

Happy Friday Everyone!

Back on June 1st 2012 I went to Cancer Research UK HQ to make a speech for volunteers week. My speech is about being a Cancer Campaigns Ambassador.

Enjoy!

Dada Sotiris

I'm sitting at home feeling absolutely terrible right now. I thought my godfathers mimosimou (anniversary of his death) was 28th June but it turns out it was June 8th and I completely missed it. I was a tiny baby when he died so I don't really remember his passing but that's no excuse really.

So here is a belated tribute to a man that loved me like I was his own. The man that bought me my first coat and stood cooling me down with a hair dryer during a heat wave. The first member of my family to succumb to cancer. A brave man that is missed everyday by those that loved him. My dad's brother and best friend. The kindest man with lots of love for his family. Hopefully he has been reunited with my aunt and grandparents and they all watch over the remaining members of the Christofi family.

Love you lots Dada, RIP xxxx

The George Pantziarka TP53 Trust - An Update

Hi everyone,

Most of you will know that my uncle has set up a Trust in Georgie's name. Well here is an update on what is happening with the trust - please visit www.tp53.co.uk or anticancer.org.uk for more information

The following text is straight from my uncle, Pan Pantziarka:

"This is just a small update to let people know about progress on setting up the George Pantziarka TP53 Trust. On the administrative side of things we are now set up with a bank account, have appointed the Trustees and are now in the process of registering with HMRC and the Charities Commission. Registering the HMRC (the inland revenue in other words), would mean that we would be able to claim Gift Aid on donations, which we can't do at the moment. Beyond that we want to register with the Charities Commission to get a charity number and formal recognition that we exist as a charity. The paperwork for all these is huge but unavoidable.

Aside from that we are continuing to make contact with more and more families. The stories are heart-breaking, but they underline why we need to create the Trust and the long way we have to go to provide support for people facing the most horrendous circumstances. The web site and forum get lots of visitors, but few seem to sign up and take part in discussions. This is something that will change with time, we hope, as the number of members increases we'll reach the critical mass required to turn the forum into a more viable proposition. In the meantime please drop by and say hello if you haven't already."


Please do take a look at the trusts website and see if there is anything there of interest to you. We do really appreciate your support :)


xxx

Fathers Day

Happy Fathers Day!

Just a quick post to pay tribute to some of the men that have shaped my life and helped make me the person I an today:

I have a lovely dad, George. I know I am the apple of his eye and that I have his love and support no matter what. My dad has had to face life without his brother, sister and his parents but he works so hard to make life better for me, Nikki, Louis and Eleni. He lives in Cyprus but we still have a very strong bond that survives the distance between us.

My stepdad David is a very brave man, outnumbered by us girls but he is a constant source of support for my mum, myself and my three sisters. He has been part of my life since I was 4 and although we don't always see eye to eye, I know he will always be around if I need him. He was amazing during Georgies's illness and death, he looked after us all.

My Buppou George is one of my favourite people. He is the best granddad any of us could ever as for and I know he loves his grandchildren more than anything. I really miss not seeing him everyday now I've moved to Essex

I miss my Buppou Peter every single day. He was an incredible man and so very brave. I also miss my godfather Sotiris so much. I was lucky to have them as my family and I hope they know I do my charity work in their honour.

My godfather Pan is a brilliant uncle to me. He is going through so much after losing Georgie but he still finds time to email me and chat to me about our shared interests. He even found strength to get me a birthday present even though my birthday is the anniversary of his sons death. I am very lucky to have him as my godfather.

Happy Fathers Day everyone xxxx

Blog Post 100: TP53 and Li Fraumeni Syndrome

Good morning one and all :)

So I have reached blog post number 100! I wanted to mark this milestone by dedicating it to our wonderful Georgie. So I am going to use this post to provide information on the gene mutation that led to him becoming ill and passing away at such a young age. Everybody knows that Georgie is the main inspiration behind this blog and all the work I do in the fight against cancer and I miss him everyday. Thank you very much to everyone who reads my blog, I can’t believe I’ve managed to get to 100 posts! Here’s to the next 100 :)

The TP53 Gene:

The TP53 gene acts as a tumour suppressor. It creates the p53 protein which kills cancerous cells. When the TP53 gene fails, the body loses one of its key ways of stopping damaged cells developing into cancer. Some people with cancer find their TP53 gene is damaged within the tumours but is functioning normally throughout the rest of their body. However, some people are born with a damaged TP53 gene. These is usually an inherited problem and it passed down from parent to child. These people have a very very very high risk of developing cancer.

Li Fraumeni Syndrome:

LFS is one of the most serious kinds of inherited TP53 disorders. It is a rare disorder that greatly increases the sufferers risk of developing several kinds of cancer especially children and young adults. The most common cancers associated with LFS are: breast cancer, osteosarcoma (a type of bone cancer) and soft tissue sarcomas.

Diagnosing Li Fraumeni Syndome:

LFS is rare so not much is known about it. Genetic testing and genetic counselling are used to confirm whether or not someone is suffering from LFS. If it is confirmed then this person will need to be regularly screened to check for cancer. The sad fact is, people with LFS are very likely to develop cancer so it is hugely important for them to be screened as cancer is easier to treat the earlier it is diagnosed.

Please look into genetic testing if you meet the following criteria:

An individual with:

·         Adrenocortical cancer at any age

·         Choroid plexus cancer at any age

·         Rhabdomyosarcoma below 5 years

·         Breast cancer below 30 years old (if eligible for BRCA1/2 testing, this should be performed first)

·         Two or more primary cancers of the following: sarcoma, breast, brain, adrenocortical or any childhood cancer; at least one below 46 years old

Two relatives affected with:

·         Sarcoma, breast, brain, adrenocortical or any childhood cancer; one relative below 36 yrs and one relative below 46 years old

Three relatives affected with:

·         Sarcoma below 45 yearrs old and

·         any cancer below 45 years old and

·         any cancer below 45 years old or sarcoma at any age

Georgie and Li Fraumeni Syndrome:

Georgie’s mum died when Georgie was one years old. She was 29 years old and had ovarian cancer. Georgie was then diagnosed with cancer a few months later on his second birthday. At the time it was written off as a horrific coincidence by doctors. It wasn’t until Georgie was diagnosed with cancer for the third time at the age of fifteen that we discovered he had Li Fraumeni Syndrome which has probably been inherited from his mother.

It took a very long time for Georgie to be diagnosed with the osteosarcoma that eventually killed him. At first he was told it was a dental problem. Had we have known he had LFS; he could have been diagnosed much quicker as alarm bells would have been ringing. We will never know if this could have saved his life. We live with the “what if?”

LFS and other TP53 disorders are rare and not much is known about them. There is little awareness about them amongst the general public and even the medical profession. There aren’t any dedicated support groups or charities, no information resources and no registry of the sufferers. There isn’t a community for the sufferers which can make it very isolating, lonely and terrifying for the sufferers and their families.

As I have mentioned before, my uncle has set up the George Pantziarka TP53 Trust to honour Georgie’s memory by providing support to families and individuals, to provide information on TP53 disorders including LFS and to get research funded to look into the condition. Hopefully the trust will be registered as a charity one day soon and will continue to grow.

At the moment the trust has a forum on the website which is used to bring together people affected by the condition. Please do take a look and feel free to ask any questions – my uncle is always happy to answer!

For more information on TP53 and Li Fraumeni Syndrome, please visit www.tp53.co.uk

xxx