A Quick Message!

Hi everyone,

Happy Friday!

Just a quick message to let everyone know that my dad, stepmum, brother and sister are coming to England from Cyprus tomorrow and I will be spending the next week catching up on some quality time with them so blog posts will be almost non existent next week. I apologise for that and it will be weird to go a whole week without doing a post but I haven’t seen my dad and family in almost two years and I am really excited to be spending time with them doing fun touristy things!

In the mean time please read through all my posts relating to our campaign The Answer is Plain. We still have until July 10^th to collect signatures and gain public support for the campaign! Watch the video, read the information and please do sign the petition to show your support!

The following posts are related to the campaign in some way!

http://pennysophia.blogspot.co.uk/2012/06/westminster.html

http://pennysophia.blogspot.co.uk/2012/05/more-plain-packaging-information.html

http://pennysophia.blogspot.co.uk/2012/02/lifestyle-choices-smoking.html

http://pennysophia.blogspot.co.uk/2012/05/cancer-types-lung.html

http://pennysophia.blogspot.co.uk/2012/06/westminster.html

Thank you :) xxx

Westminster

Yesterday was a brilliant day. I went to Westminster with Cancer Research UK and my fellow Campaigns Ambassadors to lobby our MP’s and hopefully persuade them to vote in favour of plain packaging should the Commons have a free vote on the subject.


Before I go in to the details of the day, I would like to mention my fabulous colleagues who are so supportive and enabled me to actually attend the event when it looked like I wouldn’t be able too. Francesca, Shelley, Lisa, Rute and of course the lovely Hayley all stepped in to make sure I was able to take some time off and I really really do appreciate it. I try to avoid letting my charity work interfere with my actual day job but on this occasion it did. Everyone was very accommodating and supportive and I’m really very grateful. Thank you to my lovely boyfriend Leo too, as he has to put up with me talking non stop about our campaigns and other related things. He is a fantastic support to me.


As you will all probably know by now, I have gotten very close to a lot of my fellow ambassadors. In fact, it’s now very difficult for me to go a day without texting the lovely Rochelle Bugg and I count her as one of my very very good friends. The weird thing is, up until yesterday I hadn’t met most of them. Just facebooked or tweeted them for over a year. It’s incredible to think that we have formed such close bonds without knowing each other face to face. These incredible people helped me through the loss of my cousin and we have done some incredible things together. I count them as friends.


It was absolutely amazing to finally get to meet so many of them yesterday. In fact it was the favourite part of my day. It was weird because it felt like I’d known them forever! I was bowled over by David Collins amazing rallying speech before we went over to meet the MP’s. The man needs to be a motivational speaker; he did a fantastic job of making everyone feel motivated and ready to face the MP’s. I think of David as our unofficial leader and is definitely my campaigning inspiration. It was fantastic to meet him and chat to him. He has such interesting things to say. It was also brilliant to finally be able to give the incredible Dawn Green a hug and chat to her in person. She looked incredible, especially when you consider this time six weeks ago she was in intensive care after having a major operation! I could go on and on all day about the individual ambassadors I adore but I’ll try and keep the post short and sweet! But it was also brilliant to chat to Clive, Elizabeth, Laura and so many other amazing people. Little message for the Ranasinghe family – I hope you enjoyed meeting David Cameron! What a massive honour for him to be in the presence of such an inspirational family!


I also have to mention the fabulous CRUK team. They are literally incredible! It was such an incredibly well organised event, which must have been so difficult when you think of the logistics of it! Sophie, Claire and Lizzy did an amazing job, as always! It was brilliant to see them as well as Iona, Tom, Karen, Alison and all the other brilliant members of the team. They are so welcoming and incredibly supportive. 


The lobby itself appeared to go very well. So many of us got to meet our MP’s or their researchers and discuss the campaign (The Answer is Plain) and most of us received positive support. Hopefully this will make us one step closer to seeing the introduction of plain packaging become a reality in the very near future. We’ve worked very hard on this campaign and it was fantastic to hear that so many MP’s are in favour of it. Please keep signing the petition as the consultation doesn’t end until July 10th so we still need support!


I would like to thank my MP for coming to meet me so soon after the tragic loss of his daughter. It meant a lot to me that he came to show his support. He is a very kind man and a very supportive MP. 


Also, thank you to everyone who said such lovely things about this blog. I was really touched by the things you had to say about it. It is my pride and joy and I'm so glad people enjoy reading it! Thank you :)


So all in all the day was incredible! Here’s hoping the campaign is a success because there are so many inspirational people working so hard in the fight against cancer and campaigns like this will save so many lives if they are successful. 

xxx

Cancer Types: Myeloma

Most regular readers will know I love a good “Awareness Week” blog post! So here is another! Today marks the start of Myeloma Awareness Week. This blog post is dedicated to my fellow Cancer Research UK Ambassador, Elizabeth Anne Bailey, as she lost her dad to this type of cancer.


What is Myeloma?
Myeloma is a cancer that develops from cells known as plasma cells. These are found in the bone marrow which is a spongy tissue found inside the inner part of some of our bones. Bone marrow different types of blood cells. Myeloma can develop in any place plasma cells are found. As this can often be more than one part of the body, it is often known as multiple myeloma.


Causes and Risks:
Myeloma is a rare type of cancer and exact causes are not yet known. It is more common in black people then in white or Asian. It is also more common in men then it is women. Older people are more likely to develop myeloma; it is very rare in people under forty years of age. Obesity is a probable risk factor, as is previously undergoing radiation treatment. 


Symptoms:
Multiple myeloma doesn’t always have symptoms, especially in its early stages. However, about 7/10 myeloma sufferers will go to the doctor because they have pain, mostly in the ribs and lower back. These pains are usually caused by too many plasma cells collecting there. The bones become damaged by the large numbers of plasma cells. 


Other symptoms include:
A fractured bone, thirst, feeling sick, is sick, passing lots of urine, tiredness, shortness of breath, repeated infections or infections that are difficult to shake off, unusual bleeding, swollen ankles and bruising easier than normal.


Not all of these symptoms automatically mean you have myeloma; most of the time there will be a perfectly innocent reason behind them. But if you are experiencing any of these symptoms, please do make an appointment with your GP as soon as you can.


So that’s a basic introduction to myeloma. I will be doing another post on treatment and living with myeloma during the week. Please do visit www.cancerresearchuk.org if you want/need more information in the meantime


:) xx

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

Cancer Types - Kidney

Happy Friday one and all! How fast is time flying at the moment! I can’t believe we’re in the middle of June! Life is very busy at the moment but this blog is my pride and joy so I’m doing my best to update it and I’m constantly planning new posts! I will attending a lobby of Westminster for the Plain Packaging campaign on June 27^th so please make sure you’ve signed the petition on the side of the page to show your support for the campaign! Thank you!

Today I’m going to write about a cancer type that I didn’t know much about previously. The kidneys are a hugely important part of the human body so I thought it was about time I found out a little about what happens if cancer strikes in this area. Hopefully you’ll find it interesting!

The Kidneys:

The kidneys are two fist sized, bean shaped organs which make up part of the urinary system. They are found near the middle of the back with one kidney on each side of the spine. They filter blood by collecting waste product and unneeded water as the blood passes through them. This is then turned into urine. This process takes place in tiny tubes known as nephrons and there are about a million of them in every kidney. Both kidneys have a tube known as the ureter attached and they drain the urine into the bladder. Another tube called the urethra then carries the urine from the bladder out of your body.

Kidneys also produce three important hormones. These are:

* Erythropoietin (EPO) tells the bone marrow to make red blood cells

* Renin regulates your blood pressure

* Calcitriol helps your intestine absorb calcium

Causes and Risks:

Kidney cancer is rarely diagnosed in people under the age of fifty. However it is now the eighth most common male cancer and the ninth most common female cancer in the UK. It affects a lot more men then women. Something’s can increase your risk of developing cancer of the kidney:

* Smoking – A smoker has DOUBLE the risk of a non smoker

* Gene Faults – Some people have an inherited gene which means they will have a tendency to develop kidney cancer. Having a relative with kidney cancer also increases your risk

* Obesity is another risk factor

* Hepatitis C and having a kidney disease requiring treatment using dialysis are also risk factors

* Previous treatment for cancers of the testicles or cervix can also increase your risk

* Heavy use of pain killers and drugs such as aspirin, paracetamol and ibuprofen can also increase your risk.

Symptoms:

There are not always obvious symptoms for the early stages of kidney cancer. At the moment an increasing amount of kidney cancer cases are being found during an MRI scan being performed for other reasons. However as the cancer beings to grow, symptoms become apparent:

Blood in the urine is the most common symptom. Sometimes the blood isn’t visible to the naked eye but is picked up in a urine test. Don’t panic as blood in the urine doesn’t automatically mean cancer BUT it is hugely important to visit your doctor ASAP should you experience it.

A lump or swelling in the kidney area is also a symptom. Other symptoms include loss of appetite, fatigue, weight loss, a constant pain in your side and a high temperature with very heavy sweating.

Please remember that these symptoms can be caused by lots of different things so don’t panic and think you have cancer. Just make an appointment with your GP and get yourself checked out.

Treatment:

As with most cancers; treatment will depend on your stage and grading. Your specialist will discuss it with you. Surgery, radiotherapy, radio wave treatment and cryotherapy are all options for patients with cancer of the kidney.

For more information on kidney cancer please visit www.cancerresearchuk.org

I hope you find these cancer type blog posts informative. I learn lots by researching them and I hope I’m passing that information onto you clearly. I think it’s worth learning as much as we can about cancer as it can is easier to treat the earlier it is diagnosed. Education is key when it comes to helping people survive cancer or just avoid it in the first place if they can!

Have a good weekend everyone J

xxx

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

Volunteers Week: 1st June – 7th June 2012

Yesterday marked the start of Volunteers Week. A week dedicated to thanking the millions of people, like me, who dedicate their spare time to helping others.

Most of the regular readers of this blog and people that know me will know just how much I LOVE my charity work. It has enabled me to meet some amazing people and do some amazing things. It has also helped me cope with losing someone who meant the world to me. It provides me with a way of helping to make my mark on the world. It keeps me entertained, it helps me learn new things, it helps me grow as a person. I am massively passionate about beating cancer and helping those suffering and I am very very honoured to be associated with a charity such as Cancer Research UK.

Yesterday I went to CRUK HQ and gave a speech to some of their staff. I told them about my motivations and the work I do with my fellow Cancer Campaigns Ambassadors. It was nerve-wracking but also very humbling! I really enjoyed the afternoon and was made to feel very welcome!

One of the best parts about being a cancer campaigns ambassador is being part of such a wonderful team of inspirational people. One of my fellow ambassadors set up a facebook group for us and since then I have made some wonderful friends. In fact I have become so close to one of them that she has become one of my very best friends and I can’t go a day without contact! We have all formed strong bonds between us and we use the facebook group to share information, campaigning tips and just general updates on life. We support each other through loss, cancer battles, surgeries or just days when everything gets on top of you. I can honestly say that it was the love and support of my fellow ambassadors and the work we do that got me through the aftermath of Georgie’s death and gave me strength to support my family through the worst pain imaginable. I could focus on the work we do and seek solace and comfort in the fact that whilst I couldn’t save Georgie, I can help to save thousands of other people from meeting the same fate. Our work also means that Georgie and my other five relatives are still very much a part of my everyday life and that means so much to me.

I would like to thank the staff of Cancer Research UK for being absolutely amazing to me. Every single member of staff I have come across has made me feel welcome and part of the team. The campaigns girls – Lizzy, Claire and Sophie – always have time for every single ambassador which is no small task considering there are over 150 of us! They answer our questions with thoughtful, detailed answers. They send us messages of support at difficult times, they revel in our successes and happy moments, and they commiserate with us when things are going badly. They are a constant source of support for us all.

Tom and Karen in patient liaison are wonderful. They are so busy but they find time to answer my tweets and emails. They invited me for a lovely lunch with them and always have time for me as a person as well as a volunteer as does Aaron, CRUK’s very own social media wiz!

Iona works in the volunteers department and she is just wonderful. She is kind and supportive and it was brilliant to finally get to meet her yesterday.

I could be here all day naming wonderful members of staff or other volunteers that have touched my life in some way but I will try and keep this post short! My life has been changed for the better by my voluntary work and I highly recommend everyone with some spare time finds a way to give something back to the world. It doesn’t have to be much; an hour a week would be plenty. There are so many ways to volunteer and so many different charities rely on volunteers every year. You could use that hour to make a huge difference to the lives of others across the country or the world. I can promise you that knowing your work is helping people is one of the best feelings ever.

So thank you very much to Cancer Research UK for allowing me to be part of their organisation and do some fantastic things.

Happy Volunteers Week to every single volunteer out there, the work you do is amazing!

xxx